Neurodevelopmental Disorders | Beyond Diagnosis: Lifespan Trajectories and Interventions in Neurodevelopmental Disorders*
Date: October 19, 2026
Time: 3:45 pm to 5:15 pm
Room: Coral 1
Track: Cross-Cutting Special Interest Group (SIG)
Session Description
Neurodevelopmental disorders affect individuals across the lifespan, influencing biological development, social functioning, and daily life. Patients, families, and caregivers often seek anticipatory guidance to better understand long-term outcomes and prepare for key life transitions.
This Special Interest Group session will bring together experts across neurodevelopmental conditions to explore their evolving, multidimensional impact. Presentations will highlight advances in biological mechanisms, address social and functional challenges across developmental stages, and examine ethical considerations in clinical care and long-term planning. Attendees will gain practical, lifespan-informed frameworks to support anticipatory guidance and improve care for patients and families.
Learning Objectives
At the conclusion of this session, attendees will be able to:
- Describe how neurodevelopmental disorders evolve across the lifespan, including key biological, social, and functional factors.
- Evaluate medical and supportive interventions that improve outcomes over time.
- Apply ethically grounded, lifespan-informed approaches to anticipatory guidance and transition planning.
Speakers
- (Chair) Eboni Lance, MD, PhD
- (Co-Chair) Xiaochang Zhang, PhD, FANA
- (Speaker) Andrea Gropman, MD, FANA
- (Speaker) Beau Ances, MD, PhD, MSc, FANA
Beyond the Genome: Ethical, Legal, and Social Challenges in NDDs
Description
Advances in genomics are transforming the diagnosis, classification, and treatment of neurodevelopmental disorders (NDDs), creating unprecedented opportunities for precision medicine. At the same time, these innovations raise complex ethical, legal, and social questions related to genomic testing, data stewardship, health equity, and the responsible implementation of emerging technologies.
This presentation will examine how genomics is reshaping the care of individuals with neurodevelopmental disorders while addressing the ethical and societal challenges that accompany these advances.
Participants will review the expanding role of genomic technologies in diagnosis, biomarker discovery, natural history studies, and the development of targeted therapies. Topics will include informed consent, secondary findings, variants of uncertain significance, data sharing, privacy, and long-term stewardship of genomic data. Additional areas of discussion will include equity in genomic medicine, disparities in access to testing and emerging therapies, disability identity, neurodiversity, genetic discrimination, and the responsible use of artificial intelligence in genomic healthcare. Drawing on lessons from rare disease research, the presentation will highlight strategies for translating genomic discoveries into equitable, patient-centered, and ethically responsible clinical care.
Attendees will leave with a greater understanding of the ethical, legal, and social implications of genomic medicine in neurodevelopmental disorders and practical insights into promoting equitable, responsible, and patient-centered implementation of genomic technologies in neurological care.
Integrated Lifespan Analysis of Down syndrome (DS) and Controls Using Blood-Based Biomarkers by NUcleic acid-Linked Immuno-Sandwich Assay (NULISA)
Description
Advances in blood-based biomarker technologies are transforming the study of neurodevelopmental and neurodegenerative disorders by enabling earlier detection of disease-related changes and improving our understanding of disease progression. In Down syndrome, longitudinal biomarker assessment across the lifespan offers a unique opportunity to characterize biological changes associated with aging and Alzheimer’s disease risk.
This presentation will explore the use of the NUcleic Acid-Linked Immuno-Sandwich Assay (NULISA) to evaluate blood-based biomarkers across the lifespan of individuals with Down syndrome and matched controls. Participants will review emerging data on biomarker profiles from childhood through older adulthood, examine how these markers reflect underlying biological processes and disease progression, and discuss the potential role of NULISA in identifying individuals at risk for neurological complications. The session will also highlight the implications of blood-based biomarkers for early detection, disease monitoring, and future therapeutic development.
Attendees will leave with a greater understanding of the application of advanced blood-based biomarker technologies in Down syndrome research and the potential of NULISA to enhance precision medicine approaches across the lifespan.
