XXYY Project Clinic Visit Stipend Reimbursement Form

XXYY Project Clinic Visit Stipend Reimbursement Form

Article Title: 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)
Authors: Bouw, Swaab, Tartaglia, Cordeiro, and van Rijn
Date of Publication: March 23, 2022
“Individuals with Sex Chromosome Trisomies (SCT; XXX, XXY, XYY) have an increased vulnerability for developing challenges in social adaptive functioning. The present study investigates social interaction behavior in the context of varying social load, and Autism Spectrum Disorder (ASD) symptomatology in young children aged 1β7.5 years old, with SCT (N = 105) and control children (N = 101). Children with SCT show less interaction behaviors and more social withdrawal, as compared to their control peers, which were most evident in the high social load condition. Second, social impairments related to ASD are more prevalent, as compared to controls (27.1% at clinical level). These findings stress the importance of early monitoring and (preventive) support of early social development in young children with SCT.”
Article Title: Early developmental impact of sex chromosome trisomies on attention deficit-hyperactivity disorder symptomology in young children
Authors: Kuiper, Swaab, Tartaglia, and van Rijn
Date of Publication: June 18, 2021
“Individuals with sex chromosome trisomies ([SCT], XXX, XXY, and XYY)) are at increased risk for neurodevelopmental problems, given that a significant portion of the sex chromosome genes impact brain functioning. An elevated risk for psychopathology has also been described, including attention deficit-hyperactivity disorder (ADHD). The present study aimed at identifying early markers of ADHD, providing the first investigation of ADHD symptomology in very young children with SCT.”
Article Title: Onset and progression of puberty in Klinefelter syndrome
Authors: Tanner, Miettinen, Hero, Toppari, and Raivio
Date of Publication: September 14, 2021
“Klinefelter syndrome (KS) (47,XXY and variants, KS) is the most common sex chromosome disorder in humans. However, little is known about the onset and progression of puberty in patients with KS. In this study, we describe the onset and progression of puberty in a large series of boys with KS in a single tertiary centre.”
Article Title: The Need for Greater Awareness of Sex Chromosome Variations
Author: Erin Torres, MSN, PMHNP-BC, RN-BC
Date of Publication: September 2021
From the articleβs abstract: βHealth care providers remain ill prepared to recognize these conditions and support patients and their families.β
The XXYY Project is thrilled to offer a $750 stipend to help up to 10 families per calendar year with the costs of their visit to an ACRC (AXYS Clinical and Research Consortium) clinic. This can be used to offset the visit to a clinic for an individual diagnosed with 48,XXYY.
We ask that you:
1. Be registered with the XXYY Project. Visit https://genetic.org/xxyy-project-family-information-forms/ if you need to register.
2. Complete this application form. You will be notified that we have received your application.
3. After your visit, you will need to complete the reimbursement form for travel-related receipts. You will also need to provide a note from the clinic confirming your visit so our accountants are assured that this money was indeed used by someone with XXYY to visit an ACRC clinic. The total of the receipts submitted must be greater than or equal to $750.
The XXYY Project is thrilled to offer a $480 stipend to help up to 10 families per calendar year with the costs to their visit to an ACRC ( AXYS Clinical and Research Consortium) clinic. This can be used to offset the first visit to a clinic for an individual diagnosed with 48, XXYY.
We ask that you:
1. Be registered with the XXYY Project. Visit https://genetic.org/xxyy-project-family-information-forms/ if you need to register.
2. Complete the application form below. You will be notified that we have received your application.
3. After your visit, you will need to complete the reimbursement form for travel and other receipts (doctor bills) so our accountants are assured that this money was indeed used by someone with XXYY to visit an ACRC clinic. The total of the receipts submitted must be greater than or equal to $480.
Article Title: Social functioning and emotion recognition in adults with triple X syndrome
Authors: Otter, Crins, Campforts, Stumpel, Van Amelsvoort, and Vingerhoets
Publication Date: February 15, 2021
“Our findings indicate that adults with TXS have a higher prevalence of impaired social functioning and emotion recognition. These results highlight the relevance of sex chromosome aneuploidy as a potential model for studying disorders characterised by social impairments such as autism spectrum disorder, particularly among women.”
These narrated PowerPoint lessons were used in a CME course. That course expired in 2023. We offer these as an excellent background for healthcare providers who serve adults with XXY.