As a researcher or clinical trial site staff member, your role is essential in building trust, starting with the first interaction. You can help individuals with Down syndrome and their families feel confident about clinical trial participation, support inclusive research, and connect the Down syndrome community to opportunities that matter. By participating in specialized populations training and using strategies to support individuals with Down syndrome, you can positively impact the research experience and improve research outcomes.
This page provides researchers and clinical trial staff with:
Information about Down syndrome, including common misconceptions and community insights
An opportunity to submit a research study for inclusion on our website
Access to research publications
Looking for additional information or resources? Sign up for our newsletter or contact us at research@ndss.org.
...Nearly 60% of caregivers reported in a recent survey that their trust in clinical trials would increase if researchers had experience working with individuals with Down syndrome.
What Researchers Should Know About Our Community
Myths and Facts about Down Syndrome
An overview of the pathology of Down syndrome and related statistics.
"Being brave, being seen, and having your voice heard": Perspectives of Self-Advocates and Families Toward Accessible and Impactful Research of Alzheimer's Disease in Down Syndrome
Analysis and insights collected via Down syndrome Research Partnership Group to support the need for on-going and upcoming observational studies and clinical trials.
The DS-AD Connection: Clinical Trial Awareness and Participation
Results and analysis from 2025 survey of 200 caregivers of individuals with Down syndrome, including 18 qualitative interviews.
Resources for Researchers Working in DS-AD
Tips for Researchers Conducting Procedures with Individuals with Down Syndrome
Suggested best practices for improved success with blood draws, brain imaging (MRI & PET) and lumbar puncture procedures.
National Task Group on Intellectual Disabilities and Dementia Practices
The NTG team has compiled academic and research resources for professionals, including screening tools.
LIFE-DSR Longitudinal Dataset & Biospecimens
The comprehensive database for the LIFE-DSR studies includes data from medical histories, biomarker and neuropsychological assessments, neuroimaging studies, and Goal Attainment Scales.
INCLUDE Data Coordinating Center
The INCLUDE Data Coordinating Center (DCC) is making it easier for scientists and the Down syndrome community to work together. Matching the latest technology with shareable resources, researchers use the Data Hub to enhance healthcare and change lives.
Conferences for Researchers
DSAD-ADAD Annual Conference
Annual conference fostering collaboration and knowledge exchange between the fields of Down Syndrome-associated Alzheimer disease (DS-AD) and autosomal dominant Alzheimer's disease (ADAD).
T21RS Biennial Conference
T21RS biennial International Conference is instrumental in promoting scientific exchanges, maximizing resource use, and defining the most promising research at the basic, translational, and clinical levels.
National Down Syndrome Congress Annual Convention
NDSC's annual convention for the Down syndrome community includes target tracks for leaders of affiliate organizations, self-advocates, and caregivers.
