2023 Gatlinburg Conference - Gatlinburg Conference

Time	Health and Culture	Measurement Studies	Mixed Themes
2:00 pm	Check In / Registration
3:00 pm	Enhancing Diversity in IDD Research Lauren Bishop, Sandy Magaña, Sandra Vanegas
4:30 pm	Understanding Training Grants at Graduate and Post-Doctoral levels Tracy King, Brian Boyd, Jane Roberts
6:00 pm	Gatlinburg Welcome Reception, Early Career Mingle with Gatlinburg Executive Committee

Time	Health and Culture	Measurement Studies	Mixed Themes
8:00 am	Opening Remarks John Colombo, Rodney Samaco & Eric Storch
8:30 am	NIH Updates Melissa Parisi, Alice Kau & Tracy King
9:30 am	Break
10:00 am	Achieving clinical trial readiness in Angelman syndrome — a model for other neurogenetic disorders	Data Loss in the Time of Funky Gadgets: Tales from Rare Genetic/Monogenic Disorders	Borkowski Diversity Travel and Glidden Undergraduate Student Awards Session
11:00 am	Catatonia in Genetic Syndromes: A Common Cause of Late Regression	Measuring Clinically Meaningful Change in Populations with Limited Neurobehavioral Repertoires: Approaches, Strengths, and Challenges	Interventions to Support Caregivers of Children with Rare Genetic and Neurodevelopmental Disorders
11:50 am	Inaugural Round Table Discussion on DEI in IDD Research
12:00 pm	Lunch
1:00 pm	Poor Sleep in Intellectual and Developmental Disabilities: The Pros and Pitfalls of Multi-Method Assessment.	Social-Communication Outcomes of Infants and Toddlers with Autism: Three Investigations of Practical Measurement Approaches Designed to be Sensitive to Intervention Effects and Change Over Time	Innovative Psychosocial Intervention Research Approaches in Rare Neurogenetic Conditions
2:00 pm	Understanding GI Problems in NDDs with a Genetic Etiology and Improving their Measurement	Capturing Inchstones: Novel Approaches to Measurement for Severely Affected Children With SCN2A-Associated Developmental and Epileptic Encephalopathy	Family Systems Research Approaches in Families of Children with Developmental Disabilities.
3:00 pm	Health Services Research for Autistic People Throughout the Life Course	Innovative Approaches for Overcoming Floor Effects in Standardized Assessments Used with Young Children with Neurogenetic Syndromes	David Zeaman Student Awards Session
4:30 pm	Theodore Tjossem Postdoctoral Awards Session
6:00 pm	Poster Reception 1

Time	Health and Culture	Measurement Studies	Mixed Themes
9:00 am	Plenary Talk #1: Elia M Pestana – Knight CDKL5 Developmental Epilepsy Encephalopathy. Lessons learned in the last 20 years about the disease. Elia M. Pestana Knight
10:00 am	Poster Reception 2
11:30 am	Lunch
1:00 pm	Career Journeys in IDD Research and Work-Life Balance Sarah Potter, Chair
2:00 pm	Perceptions and Practices Among Bilingual, Latinx, Families Rearing Children with Intellectual and Developmental Disabilities	Developmental Phenotyping: Results, Challenges and Lessons Learned in Natural History Studies of Genetic Conditions Affecting Neurodevelopment	Expression and Environmental Influences of the FMR1 Premutation Clinical Phenotype across the Lifespan
3:00 pm	Improving Interventions to Support Racially/Ethnically and Linguistically Diverse Children with Developmental Disabilities and Their Families	Caregiver and Natural History Driven Outcome Measures for Rare Neurodevelopmental Disorders	Postsecondary Experiences of Adults with Intellectual and Developmental Disabilities
4:00 pm	Invited oral presentations: Sleep Studies	Multi-method approaches to understanding self-injurious behaviour
5:00 pm	Plenary #2: Anne Wheeler – The Odyssey of Research in Neurogenetic Conditions: Celebrations and Ongoing Concerns. Anne Wheeler, PhD

Time	Health and Culture	Measurement Studies	Mixed Themes
8:00 am	Plenary Talk #3: Yona Lunsky – The power of partnerships to identify and address mental health concerns experienced by adults with intellectual and developmental disabilitiesPlenary Talk #3: Yona Lunsky Yona Lunsky, PhD
9:00 am	Poster Reception 3
10:00 am	Community Engagement Session
11:00 am	Plenary Talk #4: Wendy Chung – SPARKing New Insight Into Autism Across the Life Span Wendy Chung, PhD
12:00 pm	Closing Remarks John Colombo, PhD