2025 AXYS Community Conference Materials
2025 AXYS Community Conference Materials
Presentations Slides
Welcome and Keynote | Parts 1 and 2: Welcome & Site Summaries | ACRC Members
Welcome and Keynote | Part 3: GALAXY Registry – Past Insights, Current Progress, Future Directions | Shanlee Davis, Alexa Carl
The eXtraordinarY Babies Study – Progress and Research Findings | Nicole Tartaglia, Kayla Nocon
Updates from the NIMH Intramural Research Program Study on X/Y Chromosome Variations | Armin Raznahan
X and Y Chromosome Variations and Fertility Options | Hooman Sadri
Unpacking Social and Emotional Challenges for Teens/Young Adults with X/Y Variations | Caitlin Middleton, Kate Deer, Rebecca Wilson
Evaluation and Treatment Of ADHD & Anxiety In Children | Caitlin Middleton, Ciara Gurley
Understanding X and Y Variations: Genetic Diagnosis, Terminology & Next Steps Planning | Susan Howell, Kayla Molison
Transition to Adulthood – Services for Teens and Adults to Achieve Employment and Independence: Deck 1 | Deck 2 | Consensus Document | Dorothy Boothe, Ginnie Cover
Poster Presentations
All Variations
15-year trends in US pediatric sex chromosome trisomy diagnoses | Shanlee Davis, Karli Swenson, Alexandra Carl, Agnethe Berglund, Courtney Finlayson, Chijioke Ikomi, Nicole Tartaglia
Demographic Composition of Participants in Sex Chromosome Aneuploidy Studies across the Globe: a 20-year Systematic Review | Karli Swenson
The eXtraordinary Babies Study: Breastfeeding Trends and Challenges in the First Year of Life | Lidia H. Grzybacz, Susan Howell, Shanlee Davis, Judith Ross, Nicole Tartaglia
The eXtraordinarY Babies Study: Evolving Parental Perspectives and Priorities While Raising a Child Prenatally Diagnosed with Sex Chromosome Trisomy | Susan Howell, Kayla Molison, Talia Thompson, Shanlee Davis, Judith Ross, Nicole Tartaglia
The eXtraordinarY Babies Study: Parental Emotional Experiences and Coping Strategies During Prenatal Sex Chromosome Aneuploidy Diagnosis | Kayla Molison, Susan Howell, Talia Thompson, Samantha Bothwell, Shanlee Davis, Judy Ross, Nicole Tartaglia
From Deficit to Difference: Depathologizing the Language of Genetics | Elliot Polak, Nina Polak
Prenatal, Birth, and Neonatal Outcomes in Sex Chromosome Aneuploidies: Data from the INSIGHTS and GALAXY Registries | Alyssa Keller, Alexandra Carl, Samantha Bothwell, Karli Swenson, Susan Howell, Nicole Tartaglia, Shanlee Davis
47,XXY
Could there be a link between venous thromboembolic events and testosterone replacement therapy in patients with Klinefelter Syndrome? | I. Samy, A. Alarayedh, Kapz, P. Carroll, T. Yap
A double diagnosis: The psychological impact of discovering Klinefelter Syndrome during infertility evaluation | Claire Harkin, J. Elander, B. Woodward, T. Yap
Growth Charts for Boys with 47,XXY | Samantha Bothwell, Shanlee Davis, Taylor Marshall, Karli Swenson, Natalie Nokoff, Amelia Middleton,, Anna Furniss, Maram Alkhdour, Dimitri Christakis, Victoria Elliott, Jennifer Heeley, Chijioke Ikomi, Judith Ross, Stephen Stone, Maria Vogiatzi, Nicole Tartaglia
KidS Camp: Encouraging Physical Fitness and Positive Self-Concept in Adolescents with Klinefelter Syndrome | S. Ratnam, J. Papadakis, A. Goetsch Weisman, E. Leeth, T. Huit, D. Lee, K. Pothast, A. Tubman, L. Lucio, W. Brickman, C. Finlayson
Predicting Variable Developmental Outcomes from Family Data in XXY Syndrome | Shara Reimer, Siyuan Liu, Kathleen E. Wilson, Liv S. Clasen, Erin N. Torres, Jonathan Blumenthal, Armin Raznahan
48,XXYY
The eXtraordinarY Baby Study: Natural History of Infants Identified with XXYY in the Prenatal Period | Kayla Nocon, Karli Swenson, Susan Howell, Shanlee Davis, Samantha Bothwell, Judy Ross, Nicole Tartaglia
Psychotropic Medication Use In 48,XXYY Syndrome: Patterns, Effectiveness, and Clinical Implications | Joanna Dreyer, Amity Howard, Susan Howell, Samantha Bothwell, Kayla Molison, Alexandra Carl, Karli Swenson, Shanlee Davis, Gail Decker, GALAXY consortia, Nicole Tartaglia