You searched for Buy generic fast shipping Y buy online☘️🔶⣻ www.Getmaple.store ⣻🔶☘️ 25 Mg price in india Can you buy over counter in uk/page/90/Stella_Boeckman@rush.edu/page/11/Stella_Boeckman@rush.edu - Page 27 of 53 - The Association for X and Y Chromosome Variations

OT, SLP, AT & The IEP… Making Sense of the Alphabet Soup

Creating an IEP – or Individualized Educational Program – can be an incredibly confusing and daunting experience. The "alphabet soup" of acronyms and legalese often increases the anxiety and uneasiness for families. There are often many professionals in the room, some just popping in and out during the meeting, and families can feel isolated and not fully part of the process. One way to offset these feelings is to prepare ahead of time.

We've designed this article to be an at-a-glance format, combining our professional expertise and some handy resources. This information is presented via FAQs (more alphabet soup for frequently asked questions) and IEP insider tips. In addition, we have included voices and insights of families from the NFXF community and their perspectives based on personal, first-hand experiences about the IEP process. We've kept the families anonymous and sincerely thank them for their valuable comments and suggestions. All family contributions are italicized so you can quickly find them.

Be sure to check out the many handy resources at the end. It is our sincere hope that families can find some helpful information to aid them in confidently participating in your child's IEP as a key member of the team.

Frequently Asked Questions

What is IDEA – Individuals with Disabilities Education Act? And Now IDEIA – Individuals with Disabilities Education Improvement Act?

IDEA / IDEIA is the federal law that makes special education available for students with special needs.

What are FAPE (Free and Appropriate Public Education) and LRE (Least Restrictive Environment)?

FAPE – Free and Appropriate Public Education: FAPE is central to the federal law and is a protected right of children eligible for special education. Just like all other children, students with special needs have the right to a free public education.

LRE – Least Restrictive Environment: This means that schools must consider teaching a child with special needs in general education whenever possible. There is a continuum of "restrictiveness" ranging from the most restrictive of residential placements, to special education centers where all children on the campus have special needs, to special education classrooms on general education campuses, to resource style classes where students spend parts of a day in special education and parts of the day in general education and full inclusion in general education settings. The graphic is a representation of "restrictiveness".

Least restrictive environment chart

What is an IEP – Individualized Educational Plan or Program?

An IEP is a written statement for each child with a disability, and it is developed, reviewed and revised according to the requirements of IDEA.

IEPs are typically held once per year, but the timing may vary depending on the needs of your child.

Tip: You can call an IEP meeting any time.

IEPs typically have a flow of how things will proceed. Each team is different, but generally the team should use the following flow for discussing the student's educational program.

IEP team must collaboratively brainstorm to identify needs within the PRESENT LEVELS OF PERFORMANCE.
areas of identified need, the team must develop GOALS AND OBJECTIVES.
Once completed, THERAPY SUPPORTS are discussed and documented that may be necessary in order to meet the agreed upon goals and objectives.

What is Speech Language Pathology (SLP)? Is that the same as Speech Therapy (ST)? What is a Language, Speech and Hearing Specialist (LSH)? What do I need to know about Speech and Language?

Often in schools, SLP, LSH and ST are used interchangeably – BUT the training and degree are the same. Typically LSH is only used in school settings.

Communication is an UMBRELLA that includes many concepts. Here is a breakdown that we find helpful.

What is Speech?

Speech includes: production of phonemes (sounds), voice and fluency. In other words, articulation.

What is Language?

Language is the area of functioning that is most crucial for all aspects of cognitive and social development. Language is comprised of Receptive Language and Expressive Language.

Receptive Language: The understanding – or what the individual receives via communication in the environment. Receptive Language includes both verbal and visual input.
Expressive Language: Ability to communicate – express – wants and needs. Expressive Language includes both verbal and visual input.

What are Pragmatics?

Pragmatics: The use of language or may be referred to as, "social language" (e.g. taking turns, waiting, sharing, eye contact, facial expressions). Pragmatics also includes flexibility of thought and language use depending upon the situation.

What are Speech Therapy services in schools most concerned with?

Socialization /Pragmatics
Design of a Language Rich Environment
Emphasis is to encourage language through various modalities on an everyday basis.

LSH therapists are support staff who can assist in the development of communication tools, which should be used on a consistent basis and embedded into the IEP.

What is Occupational Therapy?

The term "occupation" comes from how we "occupy" our time. Our daily life's roles and activities including self-care, play, work, social engagement, leisure, and learning are all daily "occupations".
OT services are provided to a student if those supports are needed to meet annual goals as outlined in the IEP. In school settings, OT's support student learning, access to and overall participation in educational settings and routines including academic and non-academic domains.
Sensory Processing differences often greatly impact one's fulfillment of daily occupations.

What is Sensory Integration (SI)?

Sensory Integration (SI) is defined as:
The organization of sensation for use.
SI issues also known as sensory processing differences impact:
- Attention and focus
- Behavior
- Language processing
- Learning
- Overall functioning
Research has well documented SI issues in many individuals with FXS.

What is Assisted Technology (AT)?

According to IDEA 2004, AT is defined as:
Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized that is used to increase, maintain, or improve functional capabilities of children with disabilities.
AT must be considered on EVERY IEP.

What is Augmentative and Alternative Communication (AAC)?

AAC is part of AT that focuses on communication.
AAC is not just a "device that talks" but includes a broad spectrum of applications including symbols, gestures, pictures, icons to enhance communication.
Use of AAC applications will NOT stop someone from talking.

BEFORE the IEP Meeting

What to ask for in advance:

Ask for an IEP agenda.
Ask for draft copy of the IEP in advance including present levels and proposed goals.
Ask for assessment reports in advance.

*NOTE* Requests for present levels, goals and assessments prior to the meeting may need to be in writing. This can often be done via email and/or by dropping off a note at the school. Be sure to find out how much advance notice is required in order to have your requests honored and to allow the school team to adequately prepare your drafts. This can vary by district (e.g. 3 days, 1 week).

Prepare your own thoughts about your child's present levels. Have strengths and areas of concern in mind. Consider bringing this information in a handy note format that is comfortable for you to share with the team. (See Positive Student Profile – below)

DURING the IEP Meeting

Go in as a collaborator not as an adversary.

YOU are the best source of information on your child and his/her best advocate

Begin with your child as an individual who has strengths and gifts

Ask to have the IEP notes read aloud at the end of meeting with ALL team members present. This helps to make sure the team is all in agreement about what was discussed and will help to clarify any issues.

Pointedly discuss collaboration DURING the IEP meeting. Put it ON the IEP as part of the service delivery. For example:

Schedule team meetings monthly or quarterly.
Define expectations for team communication (e.g. logs in notebooks or email).
Many therapists & teachers have good intentions, but unless we have formal COLLABORATION SPACES, TIME and PLACES, it may not actually happen in the way we all want it to happen.

You do NOT need to sign the IEP right away at the end of the meeting

You can take it home, review it, share with partner/family and sign later

Many families make this their regular practice, not just when things are contentious.

Positive Student Profile Examples

Tips from Parents on Meetings

My input as a parent is really important in the IEP. So, I always write a detailed page for the "Parent Concerns" section. All year long I add bullet points to a document I keep on my computer. When something comes to mind – a particular challenge, a great success, a dream for him – I type a bullet point. Then when it's time to write my part of the IEP, I have my bullets to refer to. I try to do my piece well in advance of the meeting in hopes that his teacher might use some of my thoughts to form the goals.
I always tried to act as another part of the whole team. I did things, I volunteered to provide things, and expected others to do the same. I never went in just pounding my fist and requesting unrealistic things. It has to be cohesive!
It never hurts to ask for something, the worst they can say is "No".
Trust your gut.
Educate the IEP team on FXS and what you as the parent know about FXS learning styles each year.

Goals

Questions to ask about goals

Ask what the goal will "look like" during the school day.
- Provides context.
Ask about how skills will be generalized.
Ask about how/when progress will be updated and what the parent – school communication piece will be.
Ask about how the goal will be measured AND how that data will be collected and shared.

Goals should be

Interdisciplinary
- Not just a "speech goal" or "OT goal".
Functional, measurable and data driven.
The measured behavior should be clear so anyone reading the goal knows what it is.
HIGHLY individualized to your child.
For more information, please read Preparing for Your Child's Individual Education Program (IEP).

Tips from Parents: Food and IEPs are a great pairing!

For every meeting (monthly or IEP) we bring food. Muffins, scones, cut up fruit-yogurt and paper bowls since we usually meet in the early morning. We know their dietary needs as well and provide something healthy. It lets them know that we care about them and appreciate their help.
I believe it's a nice gesture AND it's harder to say no with a bagel in your mouth. Pete suggests bringing enough so there is extra. Then when it's in the teachers' lounge and someone says, "Where's this from?" The answer shows your generous parents as opposed to the talk in the teachers' lounge being about your list of demands. We bring food in as well. I always come in a few minutes early and stop in the front office and make sure the secretary and principal have some as well as anyone else on the team who may not be at the meeting (like the paraprofessionals!). These small gestures have always helped not just with IEP's but also throughout the year because they all KNOW me so when we have had to be firm about a decision they understand a little better. They are also more likely to go out of their way for us. 😊

AFTER the IEP

COLLABORATE and follow through!
Actively engage in the agreed upon team communication strategies – you are a key team member!
Don't hesitate to ask follow up questions. Remember, you can call an IEP meeting at any time, so if you want to meet again with the team, that is your prerogative.

Resources

IEP Information – www.understood.org (previously known as the National Center for Learning Disabilities, NCLD)

IEP Headquarters

IDEA Parent Guide

IDEIA info

Chapter 7: IEPs – Developing Your Child's Education Plan

SMART IEPs

Center for Parent Information and Resources (includes Spanish translation)

Raising Special Kids

American Speech & Hearing Association (ASHA)

American Occupational Therapy Association (AOTA)

Assistive Technology

Authors

Laura Greiss Hess, PhD, OTR/L
is an assistant professor in the department of occupational therapy at Dominican University of California. She began her career as a special education teacher in 1992 and then became a school-based occupational therapist in 1998. She worked at the UC Davis MIND Institute for 12 years on the FXS team under the mentorship of Randi Hagerman. Laura’s research and practice interests include: neurodevelopmental disorders such as Fragile X syndrome and autism, examining intervention outcomes as measured in daily life contexts with schools and families, interdisciplinary team collaboration, sensory processing and assistive technology applications.
Kerrie Lemons Chitwood, PhD, CCC-SLP
is a licensed speech language pathologist with 18 years of clinical and research experience. Kerrie currently is an adjunct professor in the Education Department at California State University, Monterey Bay (CSUMB). In addition, she is the program coordinator for the Masters of Arts in Education at CSUMB. Previously, from 2002-2012, Kerrie worked at the UC Davis MIND Institute, where she was part of the Fragile X team. She values intervention research and has extensive experience working as an integral member of a collaborative interdisciplinary team. She is committed to translational research and thrives to bridge the gap between research and practice specifically as it pertains to students and families with FXS and other neurodevelopmental disorders in various educational settings.

We’d like to thank the Murphy family, Holly Roos, the Welin family and Jayne Dixon Weber for their contributions to this article!

[[1]]This definition was conceptualized by Jean Ayres (1979) an OT and scholar who pioneered what we understand SI to be today.[[1]] [[2]]From Wright’s Law: IDEA does not require parents to “sign” an IEP. Threatening to not sign an IEP does not really mean much. Also, if you do not sign the IEP, others may think you agree to it. You have an absolute right to disagree with the IEP. Do not sit on that right. If you disagree with the IEP, go ahead and sign it, but put a note below or to the side of your name saying that your signature does not mean that you agree with the IEP. – See more at: www.wrightslaw.com/howey/iep.sign.htm[[2]]

Thank you to the National Fragile X Foundation for allowing AXYS to use this content.

Rick Frith2022-05-12T14:22:25-04:00

Salivary Testosterone in Relation to Social Cognition and Social Anxiety in Children and Adolescents with 47,XXY (Klinefelter Syndrome)

Article Title: Salivary testosterone in relation to social cognition and social anxiety in children and adolescents with 47,XXY (Klinefelter syndrome)

Author: Sophie van Rijn

Date of Publication: July 23, 2018

“Within the 47,XXY group, lower levels of salivary testosterone were significantly associated with higher levels of social anxiety. The correlation was strong, and independent of age and pubertal development. However, salivary levels of testosterone were uncorrelated to social cognitive skills.”

Rick Frith2019-02-03T13:13:10-05:00Categories: 47,XXY (Klinefelter)|

Oxandrolone Treatment Effects on Motor Function, Cognition and Behavior

Article Title: Androgen Treatment Effects on Motor Function, Cognition, and Behavior in Boys with Klinefelter Syndrome

Authors: Judith L. Ross, Nicole Tartaglia, Shanlee Davis, Allan L. Reiss, et al

Date of Publication: June 2017

“This double-blind, randomized trial demonstrates that 24 months of childhood low-dose androgen treatment in boys with Klinefelter syndrome benefited 1 of 5 primary endpoints (visual-motor function). Secondary analyses demonstrated positive effects of androgen on aspects of psychosocial function (anxiety, depression, social problems), without significant effects on cognitive function, or hyperactive or aggressive behaviors.”

Rick Frith2019-05-22T12:00:27-04:00Categories: 47,XXY (Klinefelter)|Tags: Early Testosterone Use|

Middle School Teacher Spreads X & Y Chromosome Variation Awareness

Brittney Caracciolo writes:

“I am the Life Skills Support teacher at Phoenixville Area Middle School in Pennsylvania where I teach students with special needs in grades 6-8. My 19-year-old brother has Klinefelter’s Syndrome and I have always gone with my parents to AXYS meetings whenever possible for as long as I can remember. At the last meeting I attended at DuPont Hospital, they mentioned designating the month of May as X & Y Chromosome Variation Awareness Month. The idea occurred to me that, as a teacher, I have a perfect audience to inform people about these chromosome variations. Not to mention, there are probably students in my school that may have a chromosome variation but don’t even know it. I reached out to my superintendent and assistant superintendent about sending information home to families about X & Y Chromosome Variation Awareness month and they thought it sounded very important and recommended that I speak to my building principal. My principal agreed with the idea of spreading awareness and suggested that we turn it into a week-long awareness campaign and involve student council in some of the planning.

To make it more inclusive of the whole building, we took a week and each day we designated a different disability or set of disabilities to feature. We chose: Apraxia, X & Y Chromosome Variation Awareness, Autism, Down syndrome and mental health awareness. Each day, a student-friendly description of the disability or set of disabilities was read over the announcements, along with a reminder to visit the table set up in the cafeteria for more information. Each day, there was also a specific thing to wear. For instance, Down syndrome day the students wore “crazy” socks and for X & Y Chromosome Variation Awareness, the students wore AXYS stickers that Sandy was kind enough to make us. The response was definitely overwhelmingly positive! 900 students and 50 staff got to learn about these disabilities. Many of them had never heard of X & Y Chromosome Variations before. I had several teachers come to me and tell me that they learned something new. It was also great to see so many students and teachers wearing the AXYS stickers. I even just found one on a student’s water bottle, 2 months after the fact! Additionally, I gave each teacher a set of brochures on each disability/set of disabilities for their own personal information. I think that the impact of ‘Disability Awareness Week’ will be long-lasting and I intend to do this again next year. Overall, I would say that I was very fortunate to have such a successful experience and would love for others to try and do something similar if they can. It was not very difficult and in my opinion it was very effective.

I do have a few tips to help people plan their own awareness campaign:

Consider your audience. Since I’m in a school with middle-school aged children, it was very important to me to find and make content that would support the students’ understanding. I also sent the AXYS brochures home to the parents but I wanted the students to have an age appropriate idea of the conditions as well.

Get people to help you. Although I did a lot of the planning on my own, I did get a significant amount of help from student council and the students and para-professionals in my classroom. There is a lot of time-consuming things that go into a campaign once it’s been approved- making posters, setting up a table, organizing people to be at the table, figuring out how to get information out about the campaign, etc. For all of this, you need some type of support or help. However, the really nice thing is that you can make the awareness campaign however big or small that you want it. Your awareness campaign could simply be putting AXYS brochures with information in people’s mailboxes at work or emailing them to colleagues. It does not always have to be extravagant. However, if you get the chance to do something bigger, I think it will stick out to people more.

My final tip (and this is thanks to Sandy) is to publicize your hard work afterwards. Through publicizing it, you are reaching even more people who might then feel confident that they can help spread awareness too. The more awareness the better and we can all help do our part.”

Rick Frith2018-07-31T17:18:47-04:00

Emory University Focuses on XXYY

July, 2018

One of the sex chromosome variations least understood is XXYY. While the prevalence is reported to be 1 in 18,000 to 1 in 40,000, these estimates are likely an inadequate representation of true prevalence owing to missed diagnosis and alternate diagnoses for developmental, learning and behavioral issues. While early diagnosis is improving due to pre-natal screening and pre-natal diagnosis, there remains an unaccounted number of boys and men who have this variation and may not be aware.

For families with children and adults affected by XXYY, daily challenges abound in the areas of physical health, learning, behavior and launch to adulthood. Due to lack of information informed by research, no guidelines currently exist to help guide health care providers, educators and social services for how to preserve and maintain best function and quality of life for boys, men with XXYY and their families.

Rick Frith2018-07-26T14:54:53-04:00Categories: 48,XXYY|

Contact the XXYY Project

Information for Parents

The fastest way to reach a volunteer is by email: xxyyprojectsupport@genetic.org. If you must call because you don’t have e-mail, please note: The XXYY Project helpline is managed through our sponsor organization, AXYS and forwarded to the XXYY Project volunteer. AXYS serves people with all X & Y chromosome variations (Klinefelter Syndrome, Trisomy X, XYY). When you call, please make sure you state that you are calling about XXYY specifically. Your information will be given to a volunteer who will call you back when they are available, which may not be quickly. PLEASE DO NOT EXPECT IMMEDIATE CALL BACK AND PLEASE DO NOT KEEP CALLING WHEN YOU DON’T GET IMMEDIATE CALL BACK. Our volunteers work full-time jobs. Before they call you back, they frequently need time to find the answer to your question.

Phone (Helpline): 1-267-338-4262

Outside U.S. / Canada: email if you have been in contact with us before, the XXYY Project provides the majority of our support through our private Facebook Parents and Caregivers group. Specific questions about how to deal with particular issues should be asked there, not by calling or emailing us directly. Our volunteers have limited time and are not able to provide extensive 1:1 assistance. Please email us to ask to join the Facebook group. xxyyprojectsupport@genetic.org

Information about the XXYY Project

NOTE: The XXYY Project is now under the umbrella of AXYS

For inquiries regarding the XXYY Project organization, please contact Gail Decker, XXYY Project Representative, AXYS Board of Directors.

Email: xxyy@genetic.org

Phone: 1-267-338-4262 (Helpline)

The XXYY Project
c/o AXYS
PO Box 145
Apison, TN 37302
USA

Information for Australia

Carol Vigo
E-mail: xxyyaustralia@genetic.org

Rick Frith2024-10-15T15:55:26-04:00

Research Articles List

You can use this page to search for a specific article in our library. You can search by name, author names, or date of publication.

Research Article and Other Publication Titles	Author(s)	Year of Publication
Cardiovascular risk and mortality in men receiving testosterone replacement therapy for Klinefelter syndrome in Denmark: a retrospective cohort study	Chang, Pedersen, Skakkebæk, Berglund, and Gravholt	2025
Testosterone Effects on Short-Term Physical, Hormonal, and Neurodevelopmental Outcomes (TESTO) in Infants with 47,XXY	Davis, Howell, Janusz, Lahlou, Reynolds, Thompson, Swenson, Wilson, Ross, Zeitler, and Tartaglia	2025
Generating Advancements in Longitudinal Analysis in X and Y Variations: Rationale, Methods, and Diagnostic Characteristics for the GALAXY Registry	Carl, Bothwell, Swenson, Bregante, Cohen, Cover, Dawczyk, Decker, Gerken, Hong, Howell, Raznahan, Rogol, Tartaglia, and Davis	2025
Transition to Adulthood for Individuals with X and Y Variations	Booth and Cover	2024
Evidence-based recommendations for delivering the diagnosis of X&Y chromosome multisomies in children, adolescents, and young adults: an integrative review	Riggan, Ormond, Allyse, and Close	2024
BMJ Best Practice – Klinefelter Syndrome	Rogol, Butler, and Gravholt	2024
A qualitative exploration of experiences of gender identity and gender questioning among adults with Klinefelter syndrome/XXY	Harkin and Elander	2024
Evidence‑based recommendations for delivering the diagnosis of X & Y chromosome multisomies in children, adolescents, and young adults: an integrative review	Riggan, Ormond, Allyse, and Close	2024
An extra X chromosome among adult women in the Million Veteran Program: A more benign perspective of trisomy X	Davis, Teerlink, Lynch, Klamut, Gorman, Pagadala, Panizzon, Merritt, Genovese, Ross, and Hauger	2024
A genome-first study of sex chromosome aneuploidies provides evidence of Y chromosome dosage effects on autism risk	Berry, Finucane, Myers, Walsh, Seibert, Martin, Ledbetter, and Oetjens	2024
Supernumerary sex chromosome abnormalities – new developments and future trajectories - A summary of the 2022 3rd International Workshop on Klinefelter syndrome, XYY and Trisomy X	Gravholt, Ferlin, Gromoll, Juul, Raznahan, Van Rijn, Rogol, Skakkebæk, Tartaglia, and Swaab	2023
Associations of psychiatric disorders with sex chromosome aneuploidies in the Danish iPSYCH2015 dataset: a case-cohort study	Sánchez, Montalbano, Vaez, Krebs, Byberg-Grauholm, Mortensen, Børglum, Hougaard, Nordentoft, Geschwind, Buil, Schork, Thompson, Raznahan, Helenius, Werge, and Ingason	2023
Deep phenotypic analysis of psychiatric features in genetically defined cohorts: application to XYY syndrome	Rau, Schaffer, Liu, Fish, Mankiw, Xenophontos, Clasen, Joseph, Thurm, Blumenthal, Bassett, and Torres	2023
Understanding the phenotypic spectrum and family experiences of XYY syndrome: Important considerations for genetic counseling	Jodarski, Duncan, Torres, Gore, Raznahan, and Similuk	2023
Increasing Awareness of Sex Chomosome Trisomies	Torres, Raznahan, Blumenthal, Meerschaert, and Colella	2023
Association of Supernumerary Sex Chromosome Aneuploidies With Venous Thromboembolism	Berry, Finucane, Myers, Abril, Kirchner, Ledbetter, Martin, and Oetjens	2023
Quality of life in men with Klinefelter Syndrome – a multicentre study	Franik, Fleischer, Kortmann, Stikkelbroek, D’Hauwers, Bouvattier, Slowikowska-Hilczer, Grunenwald, Van de Grift, Cartault, Richter-Unruh, Reisch, Thyen, IntHout, and Claahsen-van der Grinten	2023
The emotional journey of adapting to prenatally identified trisomy X	Thompson, Tisher, Davis, Miller, Kirk, Tartaglia, and Howell	2023
Sex chromosome aneuploidies and fertility: 47,XXY, 47,XYY, 47,XXX and 45,X/47,XXX	Rogol	2023
Executive Dysfunction in Klinefelter Syndrome: Associations With Brain Activation and Testicular Failure	Foland-Ross, Ghasemi, Lozano Wun, Aye, Kowal, Ross, and Reiss	2023
Neurocognitive and behavioral development in young children (1-7 years) with Sex Chromosome Trisomy	Van Rijn, Kuiper, Bouw, Urbanus, and Swaab	2023
Exploring Academic and Character Strengths in Students with Sex Chromosome Aneuploidies	Thompson, Davis, Takamatsu, Howell, and Tartaglia	2022
Early Preventive Intervention for Young Children With Sex Chromosome Trisomies (XXX, XXY, XYY): Supporting Social Cognitive Development Using a Neurocognitive Training Program Targeting Facial Emotion Understanding	Bouw, Swaab, and van Rijn	2022
‘I Wish the School Had a Better Understanding of the Diagnosis’: parent perspectives on educational needs of students with SCAs	Thompson, Stinnett, Tartaglia, Davis, and Janusz	2022
Early Social Behavior in Young Children with Sex Chromosome Trisomies (XXX, XXY, XYY): Profiles of Observed Social Interactions and Social Impairments Associated with Autism Spectrum Disorder (ASD)	Bouw, Swaab, Tartaglia, Cordeiro, and van Rijn	2022
Detection and characterization of male sex chromosome abnormalities in the UK Biobank study	Zhao, Gardner, Tuke, Zhang, Pietzner, Koprulu, Jia, Ruth, Wood, Beaumont, Tyrrell, Jones, Lango Allen, Day, Langenberg, Frayling, Weedon, Perry, Ong, and Murray	2022
Supporting students with sex chromosome aneuploidies in educational settings: Results of a nationwide survey	Thompson, Davis, Janusz, Frith, Pylead, Howell, Boada, Wilson, and Tartaglia	2022
Emotional reactivity and expressivity in young children with sex chromosome trisomies: evidence from psychophysiological and observational data	Kuiper, Swaab, Tartaglia, Cordeiro, and van Rijn	2022
Klinefelter syndrome: going beyond the diagnosis	Butler, Srirangalingam, Faithfull, Sangster, Senniappan, and Mitchell	2022
Early symptoms of autism spectrum disorder (ASD) in 1–8 year old children with sex chromosome trisomies (XXX, XXY, XYY), and the predictive value of joint attention	Bouw, Swaab, Tartaglia, Wilson, van der Velde, and van Rijn	2022
Association between domains of quality of life and patients with Klinefelter syndrome: a systematic review	Mehmet, Gillard, Jayasena, and Llahana	2022
Noninvasive prenatal screening (NIPS) results for participants of the eXtraordinarY babies study: Screening, counseling, diagnosis, and discordance	Howell, Davis, Thompson, Brown, Tanda, Kowal, Alston, Ross, and Tartaglia	2022
Klinefelter Syndrome: What should we tell prospective parents?	White, Zacharin, Fawcett, and McGillivray	2022
Positive predictive value of noninvasive prenatal testing for sex chromosome abnormalities	Guo, Cai, Lin, Xue, Huang, and Xu	2022
Delaying testicular sperm extraction in 47,XXY Klinefelter patients does not impair the sperm retrieval rate, and AMH levels are higher when TESE is positive	Renault, Labrune, D’Estaing, Cuzin, Lapoirie, Benchaib, Lornage, Soignon, De Souza, Dijoud, Fraison, Pral-Chatillon, Bordes, Sanlaville, Schluth-Bolard, Salle, Ecochard, Lejeune, and Plotton	2022
Early impact of X- and Y-chromosome variations (XXX, XXY, XYY) on social communication and social emotional development in 1–2-year-old children	Bouw, Swaab, Tartaglia, Jansen, and Van Rijn	2022
Triple X syndrome: Psychiatric disorders and impaired social functioning as a risk factor	Otter, Campforts, Stumpel, Van Amelsvoort, and Drukker	2022
Population-based Assessment of Cardiometabolic-related Diagnoses in Youth With Klinefelter Syndrome: A PEDSnet Study	Davis, Nokoff, Furniss, Pyle, Valentine, Fechner, Ikomi, Magnusen, Nahata, Vogiatzi, and Dempsey	2022
Recommendations to improve the patient experience and avoid bias when prenatal screening/testing	Meredith, Brackett, Diaz, Freeman, Huggins, Khan, Leach, Levitz, Michie, Onufer, Skotko, Smith, White, Waller, and Ayers	2022
What’s missing in sex chromosome aneuploidies? Representation and inclusion	Mehmet, McDonald, Saldarriaga, Pineros-Leano, and Dwyer	2022
Variegation of autism related traits across seven neurogenetic disorders	Lee, Niu, Zhang, Clasen, Kozel, Smith, Wallace, and Raznahan	2022
Clinical, Cognitive and Neurodevelopmental Profile in Tetrasomies and Pentasomies: A Systematic Review	Ricciardi, Cammisa, Bove, Picchiotti, Spaziani, Isidori, Aceti, Giacchetti, Romani, and Sogos	2022
In Vitro Propagation of XXY Undifferentiated Mouse Spermatogonia: Model for Fertility Preservation in Klinefelter Syndrome Patients	Galdon, Deebel, Zarandi, Pettenati, Kogan, Wang, Swerdloff, Atala, Lue, and Sadri-Ardekani	2021
Recent advancement in the treatment of boys and adolescents with hypogonadism	Rey	2021
Social Management Training in Males With 47,XXY (Klinefelter Syndrome): A Pilot Study of a Neurocognitive-Behavioral Treatment Targeting Social, Emotional, and Behavioral Problems	Martin, Van Rijn, Bierman, and Swaab	2021
Social functioning and emotion recognition in adults with triple X syndrome	Otter, Crins, Campforts, Stumpel, Van Amelsvoort, and Vingerhoets	2021
Incidence of gynaecomastia in Klinefelter syndrome adolescents and outcome of testosterone treatment	Butler	2021
Cortical gray matter structure in boys with Klinefelter syndrome	Foland-Ross, Gil, Shrestha, Chromik, Hong, and Reiss	2021
The Need for Greater Awareness of Sex Chromosome Variations	Torres	2021
Onset and progression of puberty in Klinefelter syndrome	Tanner, Miettinen, Hero, Toppari, and Raivio	2021
Early developmental impact of sex chromosome trisomies on ADHD symptomology in young children	Kuiper, Swaab, Tartaglia, and van Rijn	2021
The comorbidity landscape of 47,XXX syndrome: A nationwide epidemiologic study	Berglund, Stochholm, and Gravholt	2021
Patterns of psychopathology and cognition in sex chromosome aneuploidy	Rau, Whitman, Schauder, Gogate, Lee, Kenworthy, and Raznahan	2021
Eosinophilic esophagitis in individuals with sex chromosome aneuploidies: Clinical presentations and management implications	Howell, Buchanan, Davis, Miyazawa, Furuta, Tartaglia, and Nguyen	2021
Sex Chromosome Dosage Effects on White Matter	Warling, Yavi, Clasen, Blumenthal, Lalonde, Raznahan, and Liu	2021
Sperm retrieval rates in non-mosaic Klinefelter patients undergoing testicular sperm extraction: what expectations do we have in the real-life setting?	Boeri et al	2020
Neuropsychological functions, sleep, and mental health in adults with Klinefelter syndrome	Fjermestad, Huster, Thunberg, Stokke, Gravholt, and Solbakk	2020
Morbidity in Klinefelter syndrome and the effect of testosterone treatment	Chang, Skakkebæk, Davis, and Gravholt	2020
Early neurodevelopmental and medical profile in children with sex chromosome trisomies: Background for the prospective eXtraordinarY babies study to identify early risk factors and targets for intervention	Tartaglia, Howell, Davis, Kowal, Tanda, Brown, Boada, Alston, Crawford, Thompson, Van Rijn, Wilson, Janusz, and Ross	2020
The epidemiology of sex chromosome abnormalities	Berglund, Stochholm, and Gravholt	2020
Marked Increase in Incident Gynecomastia: A 20-year National Registry Study 1998-2017	Koch, Bräuner, Busch, Hickey, and Juul	2020
Rare sex chromosome variation 48,XXYY: An integrative review	Blumling, Martyn, Talboy, and Close	2020
European Academy of Andrology (EAA) Guidelines on Klinefelter Syndrome	Zitzmann, Aksglaede, Corona, Isidori, Juul, T’Sjoen, Kliesch, D’Hauwers, Toppari, Słowikowska-Hilczer, Tüttelmann, and Ferlin	2020
Diminished Ovarian Reserve in Girls and Adolescents with Trisomy X Syndrome	Davis, Soares, Howell, Cree-Green, Buyers, Johnson, and Tartaglia	2020
Metabolic and cardiovascular risk factors in Klinefelter syndrome	Spaziani and Radicioni	2020
Minipuberty in Klinefelter syndrome: Current status and future directions	Aksglaede, Davis, Ross, and Juul	2020
Psychological functioning, brain morphology, and functional neuroimaging in Klinefelter syndrome	Skakkebæk, Gravholt, Chang, Moore, and Wallentin	2020
Executive function in XXY: Comparison of performance-based measures and rating scales	Janusz, Harrison, C. Boada, Cordeiro, Howell, Tartaglia, and R. Boada	2020
High prevalence of cardiometabolic risk features in adolescents with 47,XXY/Klinefelter syndrome	Davis, DeKlotz, Nadeau, Kelsey, Zeitler, and Tartaglia	2020
American Journal of Medical Genetics: Special Issue on sex chromosome aneuploidies	Editors: Gravholt, Tartaglia, Disteche	2020
The Expert in the Room: Parental Advocacy for Children with Sex Chromosome Aneuploidies	Richardson, Riggan, and Allyse	2020
Klinefelter Syndrome: Identifying, characterizing and managing an underdiagnosed condition with serious consequences (CME Course)	Sadri and Howards	2020
Strategies to improve early diagnosis of Klinefelter syndrome	Ferlin	2020
Infertility considerations in Klinefelter syndrome: From origin to management	Deebel, Bradshaw, and Sadri-Ardekani	2020
The behavioral profile of children aged 1–5 years with sex chromosome trisomy (47,XXX, 47,XXY, 47,XYY)	Van Rijn, Tartaglia, Urbanus, Swaab, and Cordeiro	2020
From mini‐puberty to pre‐puberty: early impairment of the hypothalamus-pituitary-gonadal axis with normal testicular function in children with non-mosaic Klinefelter syndrome	Spaziani, Granato, Liberati, Rossi, Tahani, Pozza, Gianfrilli, Papi, Anzuini, Lenzi, Tarani, and Radicioni	2020
Epigenetics and genomics in Klinefelter syndrome	Skakkebæk, Viuff, Nielsen, and Gravholt	2020
Epigenetic and transcriptomic consequences of excess X-chromosome material in 47,XXX syndrome—A comparison with Turner syndrome and 46,XX females	Nielsen, Trolle, Vang, Hornshøj, Skakkebaek, Hedegaard, Nordentoft, Pedersen, and Gravholt	2020
What microRNAs could tell us about the human X chromosome	Di Palo, Siniscalchi, Salerno, Russo, Gravholt and Potenza	2020
Male infertility due to testicular disorders	Sharma, Minhas, Dhillo, and Jayasena	2020
A clinical algorithm for management of fertility in adolescents with Klinefelter syndrome	Masterson III, Nassaub, and Ramasamya	2020
Genetic Counseling and Family Support for Sex Chromosome Aneuploidies	Howell and Grand	2020
Seizures and Tremor in People with X & Y Chromosome Variations	Berry-Kravis	2020
Fertility Guidelines for Klinefelter Syndrome	Flannigan, Herati, Kogan, and Sadri-Ardekani	2020
Educational Guidelines, IEPs, and School Services for Children with X & Y Chromosome Variations	Frith and Thompson	2020
Quality of life in Klinefelter patients on testosterone replacement therapy compared to healthy controls: an observational study on the impact of psychological distress, personality traits, and coping strategies	Fabrazzo, Accardo, Abbondandolo, Goglia, Esposito, Sampogna, Catapano, Giugliano, and Pasquali	2020
Rare Disorder of Sexual Differentiation with a Mosaic 46,XX/47,XXY in a Klinefelter Syndrome Individual	Pattamshetty, Mantri, and Mohan	2020
Delivering the Diagnosis of Sex Chromosome Aneuploidy: Experiences and Preferences of Parents and Individuals	Jaramillo, Nyquist, Riggan, Egginton, Phelan, and Allyse	2019
A review of neurocognitive functioning and risk for psychopathology in sex chromosome trisomy (47,XXY, 47,XXX, 47,XYY)	Van Rijn	2019
Recent advances in managing and understanding Klinefelter syndrome	Bearelly and Oates	2019
Management of cardiovascular complications in Klinefelter syndrome patients	Accardo, Amoresano Paglionico, Di Fraia, Cittadini, Salzano, Esposito, De Bellis, and Pasquali	2019
Autism and social anxiety in children with sex chromosome trisomies: an observational study	Wilson, King, and Bishop	2019
Emotion regulation in adults with Klinefelter syndrome (47,XXY): Neurocognitive underpinnings and associations with mental health problems	Van Rijn and Swaab	2019
A placebo-controlled randomized study with testosterone in Klinefelter syndrome: beneficial effects on body composition	Gravholt, Høst, Bojesen, Erlandsen, Groth, Kristensen, Grethe Jurik, and Birkebæk	2019
Testosterone treatment and association with thrombin generation and coagulation inhibition in Klinefelter syndrome: A cross-sectional study	Gravholt, Chang, Biltofta, Skakkebæk, Feddere, Bojesend, Bora, and Münster	2019
Changes in the cohort composition of Turner syndrome and severe non-diagnosis of Klinefelter, 47,XXX and 47,XYY syndrome: a nationwide cohort study	Gravholt, Berglund, Hansen Viuff,Skakkebæk, Chang, and Stochholm	2019
Hypogonadotropic Hypogonadism, Delayed Puberty and Risk for Neurodevelopmental Disorders	Gotby, Söder, Frisén, Serlachius, Bölte, Almqvist, Larsson, Lichtenstein, and Tammimies	2019
Klinefelter syndrome and testosterone treatment: a national cohort study on thrombosis risk	Gravholt, Chang, Christiansen, Bojesen, Juul, and Münster	2019
Sperm recovery and ICSI outcomes in men with non-obstructive azoospermia: a systematic review and meta-analysis	Corona et al	2019
The Lived Experience of Klinefelter Syndrome: A Narrative Review of the Literature	Hanna, Cheetham, Fearon, Herbrand, Hudson, McEleny, Quinton, Stevenson, and Wilkes	2019
Fertility Considerations in Adolescent Klinefelter Syndrome: Current Practice Patterns	Bhasin and Oates	2019
Fertility in Adolescents With Klinefelter Syndrome: A Survey of Current Clinical Practice	Zganjar, Nangia, Sokol, Ryabets, and Samplaski	2019
Sex differences in psychiatric disorders: what we can learn from sex chromosome aneuploidies	Green, Flash, and Reiss	2019
Fertility management of Klinefelter syndrome	Fainberg, Hayden, and Schlegel	2019
A review of neurocognitive functioning of children with sex chromosome trisomies: Identifying targets for early intervention	Van Rijn, Urbanus, and Swaab	2019
Congenital heart defects associated with aneuploidy syndromes: New insights into familiar associations	Lin, Santoro, High, Goldenberg, and Gutmark-Little	2019
Ovarian reserve evaluation in a woman with 45,X/47,XXX mosaicism: A case report and a review of literature	Tang, Lin, Guo, Hou, and Yu	2019
Characterization of autism spectrum disorder and neurodevelopmental profiles in youth with XYY syndrome	Joseph, Farmer, Chlebowski, Henry, Fish, Makiw, Xenophontos, Clasen, Saul, Seidlitz, Blumenthal, Torres, Thurm, and Raznahan	2018
Klinefelter Syndrome. The Effects of Early Androgen Therapy on Competence and Behavioral Phenotype	Flannigan, Patel et al	2018
Testosterone in Infants with XXY	Tartaglia, Majidi, and Davis	2018
Neuroses and neuroticism: What’s the difference?	Felman	2018
Testosterone Therapy in Men With Hypogonadism: An Endocrine Society Clinical Practice Guideline	Bhasin, Brito, Cunningham, Hayes, Hodis, Matsumoto, Snyder, Swerdloff, Wu, and Yialamas	2018
Klinefelter Syndrome – Integrating Genetics, Neuropsychology and Endocrinology	Gravholt, Chang, Wallentin, Fedder, Moore, and Skakkebæk	2018
Klinefelter syndrome: more than hypogonadism	Kanakis and Nieschlag	2018
Vocal and gestural productions of 24-month-old children with sex chromosome trisomies	Zampini, Draghi, Silibello, Dall’Ara, Rigamonti, Suttora, Zanchi, Salerni, Lalatta, and Vizziello	2018
Everything You Never Knew About the ADHD Brain	Kravit	2018
DNA hypermethylation and differential gene expression associated with Klinefelter syndrome	Skakkebæk, Nielsen, Trolle, Vang, Hornshøj, Hedegaard, Wallentin, Bojesen, Hertz, Fedder, Østergaard, Pedersen, and Gravholt	2018
Anxiety and depression in Klinefelter syndrome: The impact of personality and social engagement	Skakkebæk, Moore, Pedersen, Bojesen, Kristensen, Fedder, Hertz, Østergaard, Wallentin, and Gravholt	2018
Salivary testosterone in relation to social cognition and social anxiety in children and adolescents with 47,XXY (Klinefelter syndrome)	Van Rijn	2018
Oxandrolone Treatment Results in an Increased Risk of Gonadarche in Prepubertal Boys With Klinefelter Syndrome	Davis, Lahlou, Cox-Martin, Kowal, Zeitler, and Ross	2018
Androgen treatment effects on hippocampus structure in boys with Klinefelter Syndrome	Foland-Ross, Ross, and Reiss	2018
The Association of Motor Skills & Adaptive Functioning in XXY/Klinefelter & XXYY Syndromes	Tartaglia, Davis, Martin, Cordeiro, and Richardson	2018
Counseling in Pediatric Populations at Risk for Infertility and/or Sexual Function Concerns	Nahata, Quinn, and Tishelman	2018
Research Suggests a Cure for Neuroticism	Whitbourne	2017
Quality of life in men with Klinefelter syndrome: the impact of genotype, health, socioeconomics, and sexual function	Skakkebæk, Moore, Chang, Fedder, and Gravholt	2017
Fertility achieved through in vitro fertilization in a male patient with 48,XXYY syndrome	Liu, Zhao, Hong, Mao, Yang, Zhang, and Jiang	2017
Androgen Treatment Effects on Motor Function, Cognition, and Behavior in Boys with Klinefelter Syndrome	Ross, Tartaglia, Davis, Reiss, et al	2017
Autism Spectrum Disorder in Males with Sex Chromosome Aneuploidy: XXY/Klinefelter syndrome, XYY, and XXYY	Tartaglia, Wilson, Miller, Rafalko, Cordeiro, Davis, Hessl and Ross	2017
Sperm recovery and ICSI outcomes in Klinefelter syndrome: a systematic review and meta-analysis	Corona, Pizzocaro, Lanfranco, Garolla, Pelliccione, Vignozzi, Ferlin, Foresta, Jannini, Maggi, Lenzi, Pasquali, and Francavilla	2017
Oxandrolone Yields Short-term Benefits in Treating Klinefelter’s Syndrome	Davis, Cox-Martin, Bardsley, Kowal, Zeitler, and Ross	2016
Advances in the Interdisciplinary Care of Children with Klinefelter Syndrome	Davis, Howell, Wilson, Tanda, Ross, Zeitler, and Tartaglia	2016
The Klinefelter syndrome: current management and research challenges	Nieschlag, Ferlin, Gravholt, Gromoll, Kohler, Lejeune, Rogol, and Wistuba	2016
Expanding the Phenotype of Triple X Syndrome: A Comparison of Prenatal Versus Postnatal Diagnosis	Wigby, D’Epagnier, Howell, Reicks, Wilson, Cordeiro, and Tartaglia	2016
ACMG Releases Updated Position Statement on Noninvasive Prenatal Screening (NIPS) for Detection of Fetal Aneuploidy: Addresses Questions About Expanded Role of NIPS in Prenatal Practice	ACMG	2016
The Impact of Living with Klinefelter Syndrome: A Qualitative Exploration of Adolescents and Adults	Turriff, Macnamara, Levy, and Biesecker	2016
The role of genes, intelligence, personality, and social engagement in cognitive performance in Klinefelter syndrome	Skakkebæk, Moore, Pedersen, Bojesen, Kristensen, Fedder, Laurberg, Hertz, Østergaard, Wallentin, and Gravholt	2016
The Brain-Behavior Connection In Children with ADHD	Nigg	2016
Secrets of the ADHD Brain: Why We Think, Act, and Feel the Way We Do	Dodson	2016
What are the treatments for symptoms in Klinefelter syndrome (KS)?	NIH	2016
Klinefelter syndrome (KS): genetics, clinical phenotype and hypogonadism	Bonomi, Rochira, Pasquali, Balercia, Jannini, and Ferlin	2016
Cognitive and behavioral profile of 47,XXX (Trisomy X): A research approach	Van Rijn	2015
Phenotype and Adverse Quality of Life in Boys with Klinefelter Syndrome	Close, Fennoy, Smaldone, and Reame	2015
50 Shades of Gray: Depression Common in Borderline Testosterone	Tucker	2015
Testis Development and Reproductive Options in Males with Klinefelter Syndrome	Davis, Rogol, and Ross	2015
Executive dysfunction and the relation with behavioral problems in children with 47,XXY and 47,XXX	Van Rijn and Swaab	2015
In the Dark: Challenges of Caring for Sons with Klinefelter Syndrome	Close, Sadler, and Grey	2015
Sex Isn’t Chromosomes: The Story of a Century of Misconceptions about X & Y	Steadman	2015
Brain and behavior in 48, XXYY syndrome	Hanley, Blumenthal, Raitano Lee, Baker, Clasen, and Giedd	2015
Neural systems for social cognition: gray matter volume abnormalities in boys at high genetic risk of autism symptoms, and a comparison with idiopathic autism spectrum disorder	Van Rijn, Swaab, Goddard, and Rombouts	2015
FDA Panel Rejects New Oral Testosterone Replacement Drug	Hand	2014
Latest Testosterone Study Finds No Heart Attack Risk	Melville	2014
Putting the 'T'rouble in Testosterone Therapy?	Vega	2014
‘Striking’ Impact of Bullying on Teens’ Mental, Physical Health	Brauser	2014
Social cognition and underlying cognitive mechanisms in children with an extra X chromosome: a comparison with autism spectrum disorder	Van Rijn, Stockmann, van Buggenhout, van Ravenswaaij-Arts, and Swaab	2014
Executive Function: What Does It Mean? Why Is It Important? How Can We Help?	Katz	2014
Brain morphology in children with 47,XYY syndrome: a voxeland surface-based morphometric study	Lepage, Hong, Raman, Marzelli, Roeltgen, Lai, Ross, and Reiss	2014
Growing Up with XYY	Unique - Rare Chromosome Disorder Support Group	2014
Cognitive and neurological aspects of sex chromosome aneuploidies	Hong and Reiss	2014
Autism spectrum disorders in XYY syndrome: two new cases and systematic review of the literature	Margari, Lamanna, Craig, Simone, and Gentile	2014
Exercising the Mind to Treat Attention Deficits	Goleman	2014
Long-term testosterone therapy does not increase the risk of prostate cancer	Elsevier Health Sciences	2014
The Sexual Politics of Autism	Hughes	2014
Social Attention, Affective Arousal and Empathy in Men with Klinefelter Syndrome (47,XXY): Evidence from Eyetracking and Skin Conductance	Van Rijn, Barendse, van Goozen, and Swaab	2014
Surgical management of male infertility: an update	Velasquez and Tanrikut	2014
Medical treatment of male infertility	Dabaja and Schlegel	2014
Genetic evaluation of male infertility	Wosnitzer	2014
Management of Klinefelter syndrome during transition	Gies, Unuane, Velkeniers, and De Schepper	2014
Feminized behavior and brain gene expression in a novel mouse model of Klinefelter Syndrome	Ngun, Ghahramani, Creek, Williams-Burris, Barseghyan, Itoh, Sánchez, McClusky, Sinsheimer, Arnold, and Vilain	2014
When to ask male adolescents to provide semen sample for fertility preservation?	Schlegel et al	2014
Seeing X Chromosomes in a New Light	Zimmer	2014
Club helps teens learn how to mix and mingle	Grace	2014
Clinical research: Extra X impairs awareness of others’ minds	Yandell	2014
Phenotypic differences in mosaic Klinefelter patients as compared with non-mosaic Klinefelter patients	Samplaski, Lo, Grober, Millar, Dimitromanolakis, and Jarvi	2014
Video Game ‘Addiction’ More Likely With Autism, ADHD	Gordon	2013
Association of Testosterone Therapy With Mortality, Myocardial Infarction, and Stroke in Men With Low Testosterone Levels	Vigen, O’Donnell, Barón, et al	2013
FDA Panel Split on Safety of Long-Acting Testosterone	Brooks	2013
First Brain-Wave Test for ADHD Approved by FDA	Lowes	2013
47,XYY Syndrome: Clinical Phenotype and Timing of Ascertainment	Bardsley, Kowal, Levy, Gosek, Ayari, Tartaglia, Lahlou, Winder, Grimes, and Ross	2013
A qualitative exploration of mothers’ and fathers’ experiences of having a child with Klinefelter syndrome and the process of reaching this diagnosis	Bourke, Snow, Herlihy, Amor, and Metcalfe	2013
Timing of Diagnosis of 47,XXY and 48,XXYY: A Survey of Parent Experiences	Visootsak, Ayari, Howell, Lazarus, and Tartaglia	2013
Klinefelter syndrome: the commonest form of hypogonadism, but often overlooked or untreated	Nieschlag	2013
Neuroanatomical correlates of Klinefelter syndrome studied in relation to the neuropsychological profile	Skakkebæk, Gravholt, Rasmussen, Bojesen, Jensen, Fedder, Laurberg, Hertz, Ostergaard, Pedersen, and Wallentin	2013
Mosaic double aneuploidy: Down syndrome and XYY	Parihar, Koshy, and Srivastava	2013
Language Delay in Boys? Consider Klinefelter Syndrome	Jancin	2012
Living with Klinefelter Syndrome (47,XXY) Trisomy X (47, XXX) and 47, XYY: A Guide for Families and Individuals Affected by Extra X and Y Chromosome Variations	Cover	2012
Klinefelter’s syndrome—a diagnosis mislaid for 46 years	Anonymous patient, Bhartia, and Ramachandran	2012
Sex chromosomes and the brain: a study of neuroanatomy in XYY syndrome	Bryant, Hoeft, Lai, Lackey, Roeltgen, Ross, and Reiss	2012
Behavioral and Social Phenotypes in Boys With 47,XYY Syndrome or 47,XXY Klinefelter Syndrome	Ross, Roeltgen, Kushner, Zinn, Reiss, Zeger Bardsley, McCauley, and Tartaglia	2012
The social brain in psychiatric and neurological disorders	Kennedy and Adolphs	2012
Attention-Deficit Hyperactivity Disorder Symptoms in Children and Adolescents with Sex Chromosome Aneuploidy: XXY, XXX, XYY, and XXYY	Tartaglia, Ayari, Hutaff-Lee, and Boada	2012
Reduced artery diameters in Klinefelter syndrome	Foresta, Caretta, Palego, Ferlin, Zuccarello, Lenzi, and Selice	2012
Vulnerability for autism traits in boys and men with an extra X chromosome (47,XXY): the mediating role of cognitive flexibility	Van Rijn, Bierman, Bruining, and Swaab	2012
Cardiovascular abnormalities in Klinefelter syndrome	Pasquali, Arcopinto, Renzullo, Rotondi, Accardo, Salzano, Esposito, Saldamarco, Isidori, Marra, Ruvolo, Napoli, Bossone, Lenzi, Baliga, Saccà, and Cittadini	2012
Clinical review: Klinefelter syndrome - a clinical update	Groth, Skakkebæk, Høst, Gravholt, and Bojesen	2012
Executive Function...What is this anyway?	Dendy	2011
Complexities of Hypogonadism	Muthalagu	2011
EEOC Announces Final Bipartisan Regulations for the ADA Amendments Act	EEOC Press Release	2011
Guide to Trisomy X	Erskine	2011
Prevalence and diagnosis rates of Klinefelter syndrome: an Australian comparison	Herlihy, and Gillam	2011
Thinking outside the square: considering gender in Klinefelter syndrome and 47, XXY	Herlihy and Gillam	2011
Individualized Education Program (IEP): Summary, Process, and Practical Tips	Goodwin Procter and Autism Speaks	2011
The psychosocial impact of Klinefelter syndrome and factors influencing quality of life	Herlihy, McLachlan, Gillam, Cock, Collins, and Halliday	2011
IDEA – The Manual for Parents and Students About Special Education Services in Texas	The Arc and Disability Rights Texas	2011
Effects of short‐course androgen therapy on the neurodevelopmental profile of infants and children with 49,XXXXY syndrome	Samango‐Sprouse, Gropman, Sadeghin, Kingery, Lutz‐Armstrong, and Rogol	2011
New Guide Offers Road Map To IEP Process	Diament	2011
Hypogonadism in the Aging Male Diagnosis, Potential Benefits, and Risks of Testosterone Replacement Therapy	Surampudi, Wang, and Swerdloff	2011
AAP: Guideline Calls for Pre-K ADHD Evaluation	Bankhead	2011
Prevalence and Psychosocial Correlates of Depressive Symptoms Among Adolescents and Adults with Klinefelter Syndrome	Turriff, Levy, and Biesecker	2011
Neural systems for social cognition in Klinefelter syndrome (47,XXY): evidence from fMRI	Van Rijn, Swaab, Baas, de Haan, Kahn, and Aleman	2011
48,XXYY, 48,XXXY and 49,XXXXY syndromes: not just variants of Klinefelter syndrome	Tartaglia, Ayari, Howell, D’Epagnier, and Zeitler	2011
Neuroanatomical phenotype of Klinefelter syndrome in childhood: a voxel-based morphometry study	Bryant, Hoeft, Lai, Lackey, Roeltgen, Ross, and Reiss	2011
Tantrum Tamer: New Ways Parents Can Stop Bad Behavior	Wang	2011
How many genomes do you have?	Rennie	2011
Mother labored to find reason for son’s developmental delays	Boodman	2010
Considerations for Androgen Therapy in Children and Adolescents with Klinefelter Syndrome (47, XXY)	Tartaglia and Rogol	2010
Testosterone Therapy in Men with Androgen Deficiency Syndromes: An Endocrine Society Clinical Practice Guideline	Bhasin, Cunningham, Hayes, Matsumoto, Snyder, Swerdloff, and Montori	2010
Assessing the risks and benefits of diagnosing genetic conditions with variable phenotypes through population screening: Klinefelter syndrome as an example	Herlihy, Halliday, McLachlan, Cock, and Gillam	2010
What is Intersex?	Organisation Intersex International Australia Limited	2010
Postnatal screening for Klinefelter syndrome: is there a rationale?	Herlihy, Gillam, Halliday, and McLachlan	2010
Representations of Klinefelter Syndrome	Noble	2010
Sex Chromosome Aneuploidies (from The Handbook of Pediatric Neuropsychology)	Wilson, Bennett, Howell, and Tartaglia	2010
A Review of Trisomy X (47, XXX)	Tartaglia, Howell, Sutherland, Wilson, and Wilson	2010
Anatomic magnetic resonance imaging of the developing child and adolescent brain and effects of genetic variation	Giedd, Stockman, Weddle, Liverpool, Alexander-Bloch, Wallace, Lee, Lalonde, and Lenroot	2010
Considerations for Androgen Therapy in Children and Adolescents with Klinefelter Syndrome (47, XXY)	Rogol and Tartaglia	2010
Role of the X Chromosome in Social Behavioural Dysfunction and Autism-like Behaviour	Van Rijn, Swaab, Bierman, and Zijlstra	2010
Social Function in Multiple X and Y Chromosome Disorders: XXY, XYY, XXYY, XXXY	Visootsak and Graham	2009
The psychological and social impact of Klinefelter’s Syndrome	Morris, Jackson, and Hancock	2009
Tremor in 48,XXYY Syndrome	Tartaglia, Borodyanskya, and Hall	2009
An Extra X or Y Chromosome: Contrasting the Cognitive and Motor Phenotypes in Childhood in Boys with 47,XYY Syndrome or 47,XXY Klinefelter Syndrome	Ross, Zeger, Kushner, Zinn, and Roeltgen	2009
The Cognitive Phenotype in Klinefelter Syndrome: A Review of the Literature Including Genetic and Hormonal Factors	Tartaglia, Boada, Janusz, and Hutaff-Lee	2009
Structural and functional neuroimaging in Klinefelter (47,XXY) syndrome: a review of the literature and preliminary results from a functional magnetic resonance imaging study of language	Steinman, Ross, Lai, Reiss, and Hoeft	2009
Triple X syndrome: a review of the literature	Otter, Schrander-Stumpel, and Curfs	2009
A New Look at XXYY Syndrome: Medical and Psychological Features	Tartaglia, Davis, Hench, Nimishakavi, Beauregard, Reynolds, Fenton, Albrecht, Ross, Visootsak, Hansen, and Hagerman	2008
XYY Study Day Report	Unique - Rare Chromosome Disorder Support Group	2008
Understanding and Modifying the Behavior of Boys with XXYY: A Guide for Parents and Professionals	Riley	2007
Testosterone Deficiency	Gordon	2006
Morbidity in Klinefelter Syndrome: A Danish Register Study Based on Hospital Discharge Diagnoses	Bojesen, Juul, Birkebæk, and Gravholt	2006
Unique - XYY	Unique - Rare Chromosome Disorder Support Group	2006
When It’s Not Just ADHD: Uncovering Comorbid Conditions	Silver	2006
Klinefelter's syndrome (karyotype 47, XXY) and schizophrenia-spectrum pathology	Van Rijn, Aleman, Swaab, and Kahn	2006
Klinefelter syndrome and other sex chromosomal aneuploidies	Visootsak and Graham	2006
The structural brain correlates of cognitive deficits in adults with Klinefelter’s syndrome	Itti, Gaw Gonzalo, Pawlikowska-Haddal, Boone, Mlikotic, Itti, Mishkin, and Swerdloff	2006
Puberty-related influences on brain development	Giedd, Clasen, Lenroot, Greenstein, Wallace, Ordaz, Molloy, Blumenthal, Tossell, Stayer, Samango-Sprouse, Shen, Davatzikos, Merke, and Chrousos	2006
Cancer Incidence and Mortality in Men with Klinefelter Syndrome: A Cohort Study	Swerdlow, Schoemaker, Higgins, Wright, and Jacobs	2005
Early Androgen Deficiency in Infants and Young Boys with 47,XXY Klinefelter Syndrome	Ross, Samango-Sprouse, Lahlou, Kowal, Elder, and Zinn	2005
Mortality in Patients with Klinefelter Syndrome in Britain: A Cohort Study	Swerdlow, Higgins, Schoemaker, Wright, and Jacobs	2005
Klinefelter’s syndrome (XXY) as a genetic model for psychotic disorders	DeLisi, Maurizio, Svetina, Ardekani, Szulc, Nierenberg, Leonard, and Harvey	2005
Inhibin B and Anti-Müllerian Hormone, But Not Testosterone Levels, Are Normal in Infants with Nonmosaic Klinefelter Syndrome	Lahlou, Fennoy, Carel, and Roger	2004
Learning Needs of Boys With KS - Information for Teachers & Parents	Collingridge	2004
Neurobehavioral and Psychosocial Issues in Klinefelter Syndrome	Geschwind and Dykens	2004
IEP and Lesson Plan Development Handbook of Specially Designed Instruction and Supplementary Aids and Services	Kentucky Special Education Cooperatives and Kentucky Department of Education	2003
What parents are told after prenatal diagnosis of a sex chromosome abnormality: interview and questionnaire study	Abramsky, Hall, Levitan, and Marteau	2001
Disorders of Executive Functions - Civil and Criminal Law Applications	Hall and Sbordone	1993
Klinefelter’s Syndrome: Historical Background and Development	Klinefelter	1986

Rick Frith2022-02-24T13:28:16-05:00

XXYY Project: Other Countries and Languages

Rick Frith2018-07-26T13:21:23-04:00

XXYY Project: United Kingdom

XXYY in the United Kingdom

Members of the XXYY Project in the UK have an active support group. They hold regular chats and events.

Click on the image below to visit their web page:

Photos from a 2015 XXYY Event in the UK

Rick Frith2018-07-31T17:50:07-04:00

XXYY Project: Dutch

Welkom bij het XXYY Project

Van harte welkom op deze website over het XXYY Syndroom en het XXYY Project. Hier vindt u informatie om u te steunen en u voor te lichten over deze genetische aandoening en over het medisch onderzoek daaromtrent.

Leer de symptomen en kenmerken van het XXYY Syndroom kennen en kom te weten hoe u betrokken kunt zijn bij onze hulpgroep en bij het XXYY Project, een project van de non-profit organisatie genaamd AXYS.

Brochure:

Feiten & Mythen Over het XXYY Syndroom

Er klopt iets niet

Wat doe je als jouw zoon of dochter een probleem heeft, waar geen aandacht aan wordt besteed?

Als u vermoedt dat uw zoon het XXYY Syndroom heeft, klik dan op het document voor meer informatie.

De volgende informatie is bedoeld om ouders en verzorgers te helpen begrijpen dat het belangrijk is om medisch advies in te winnen als zij het gevoel hebben dat “er iets niet klopt” aan hun kind. Deze informatie zelf is niet bedoeld om te dienen als medisch advies en kan ook nooit medisch advies vervangen. Raadpleeg altijd een arts als uw kind problemen ervaart.

Er klopt iets niet

Alle foto’s van de jongens en mannen met XXYY op deze website zijn gebruikt met toestemming van de betrokkenen, ter herkenning voor anderen.

Deze website is alleen bedoeld voor voorlichtingsdoeleinden en heeft niet tot doel om medisch advies te verstrekken. Deze website kan niet garanderen dat de informatie accuraat en compleet is. Ook kan deze website niet verantwoordelijk worden gehouden voor fouten of omissies of voor resultaten die gebaseerd zijn op deze informatie. De website heeft tot doel om recente en accurate informatie te verschaffen. Medische wetenschap is zeer veranderlijk en menselijke fouten kunnen altijd voorkomen.

Rick Frith2020-05-05T16:29:51-04:00