Medical Research for Researchers and Participants
The NDSC Medical and Scientific Review Committee review medical information and research announcements that have been presented to the National Down Syndrome Congress (NDSC) to ensure that they are scientifically sound. This is not a full listing of all research participation that is available for individuals with Down syndrome and their families. For more, go to DS-Connect.
For Researchers:
All requests to the NDSC to disseminate medical and scientific research recruitment materials will be reviewed by the NDSC Medical and Scientific Review Committee. Please submit the required information on the following form. Only submittals that provide all the required information will be reviewed by the Committee. The Committee will try to provide a response to the submitter within 30 days of submitting the request. If you have any questions, please contact NDSC at info@ndsccenter.org.
For Participants:
The following medical research projects have been reviewed by the NDSC Medical and Scientific Review Committee and approved to be acceptable for participation.
- Parent Survey to Develop a Measure of Maladaptive Behavior for Down Syndrome (BIDS-Phase 2), Cincinnati Children’s Hospital, Department of Developmental and Behavioral Pediatrics. Location - virtual. Ages - open to children with Down syndrome ages 2 to 17 years old. For more information - research flyer. Contact: dsresearch@cchmc.org
- Neurocognitive and quality of life outcomes in individuals with Down syndrome and acute lymphoblastic leukemia, St Jude is recruiting caregivers of individuals with Down syndrome and no history of childhood cancer. Location - virtual. Ages - individuals with Down syndrome ages 1 to 34; however, we are most interested in caregivers of younger children at this time (age 5 and under). For more information - research flyer. Contact: DSCOG2@stjude.org or 1-833-591-0724
- Speech Accessibility Project, University of Illinois, to make voice recognition technology accessible to everyone. Location - virtual, open to US and Puerto Rico residents (excluding Illinois, Texas and Washington). Ages - people 18+ with Down Syndrome, Autism, Stroke, Aphasia, Cerebral Palsy, ALS, or PLS. For more information - flyer. Contact: speechaccessibility@beckman.illinois.edu
- Oxygen Therapy in Children and Adolescents with Down Syndrome and Obstructive Sleep Apnea, Cincinnati Children’s Hospital Medical Center. Location - Hosted by several medical centers across the U.S. Ages - recruiting ages 5 to 17 years old who are diagnosed with OSA and have not been successful with a CPAP. For more information - flyer. Contact: suzanna.hicks@cchmc.org
- Infant Movement Study, by Boston University's Infant Communication Lab is looking to better understand everyday movements and activities of infants with Down syndrome. Location - virtual. Ages - under 12 months. For more information - flyer. Contact: buicl.studies@gmail.com
- Infantile Spasms, Boston Children's Hospital is conducting a research study to understand whether families of individuals with Down syndrome have received education about the risk of infantile spasms from healthcare providers. The study also seeks to identify if there are geographic or demographic differences in who receives this information. This is a short, online survey for adult caregivers of people with Down syndrome across the United States. Location - virtual. Ages - parents/caregivers of individuals with Down syndrome of all ages. For more information - flyer. Contact: daniel.loizzo@childrens.harvard.edu
- Atopic Dermatitis and/or Alopecia Areata , Icahn School of Medicine at Mount Sinai is conducting a single-center, open-label, basket Phase 2b trial that will enroll Down Syndrome subjects with at least one inflammatory skin condition (Atopic Dermatitis and/or Alopecia Areata). Patients will receive Abrocitinib 100 mg daily for 12 weeks. Location - Mount Sinai, NYC. Ages - over age 12. For more information - flyer. Contact: giselle.singer@mssm.edu
- Caregiver and Self-Advocate Perspectives on Research Design and Information (PARDI), Cincinnati Children’s Hospital Medical Center - This study aims to understand caregiver and self-advocate perceptions on participating in research and use outcomes from this study to inform the design and development of future research that would allow for stronger engagement and inclusion of individuals with Down syndrome. Location - virtual. Ages - open to caregivers or self-advocates, 18 years or older in English and Spanish. For more information - flyer. Contact: amanda.white@cchmc.org
- Caregiver experiences with understanding trauma-informed care, Eastern Michigan University. This study also aims to assess families’ current understanding of trauma-informed care and perspectives on a new trauma-informed care protocol designed for pediatric medical genetics care settings. Location - virtual. Ages - open to caregivers of a child under the age of 18 with a genetic condition. For more information - flyer. Contact: star_researchlab@emich.edu
- HomeGrown to improve practices around healhy eating and physical activity. Study activities will involve baseline and follow up data collection via online surveys, dietary recalls, and having the child wear an activity counter (like a pedometer) for 7 daysLocation - virtual. Ages - ages 2 to 6 years old. For more information - flyer. Contact: go.homegrown@unc.edu
