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Medical Research

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. 

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.

  • Assessing Autonomy in Health Care Decision Making Adults with Down Syndrome, MGH Institute of Health Professions, open to Adults with Down syndrome. For more information see the research flyer. Contact: jpearce@mghihp.edu
  • 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, open to children with Down syndrome ages 2 to 17 years old. For more information see the research flyer. Contact: dsresearch@cchmc.org
  • Play to Move, Augment Therapy/University of California Santa Cruz, open to children ages 5 to 18 years old with Down syndrome. For more information see the research flyer. Contact: nulagana@ucsc.edu or crosby@ucsc.edu
  • Assessment of the Sleep Care Priorities of Adolescents & Young Adults with Down Syndrome, open to youth ages 13 to 21 years old with Down syndrome. For more information see the research flyer. Contact: PageS@pennmedicine.upenn.edu
  • Neurocognitive and quality of life outcomes in individuals with Down syndrome and acute lymphoblastic leukemia, we are recruiting caregivers of individuals with Down syndrome and no history of childhood cancer. The age range for individuals with Down syndrome is 1 to 34; however, we are most interested in caregivers of younger children at this time (age 5 and under).  For more information see the research flyer. Contact: DSCOG2@stjude.org or 1-833-591-0724
  • Speech Accessibility Project, the purpose is to make voice recognition technology accessible to everyone. The study is intended for people 18+ with Down Syndrome, Autism, Stroke, Aphasia, Cerebral Palsy, ALS, or PLS. The study is open to US and Puerto Rico residents (excluding Illinois, Texas and Washington). For more information, see the flyer. Contact: Bryan Engel at bryan_engel@verizon.net. 
  • (Espanol) UC Davis Mind Institute, this study is evaluating Play-Based Language Assesements in youth wth DS from Spanish-speaking households. For more information see the flyer and flyer (in Spanish). Contact: vivng@ucdavis.edu. 
  • Oxygen Therapy in Children and Adolescents with Down Syndrome and Obstructive Sleep Apnea, recruiting ages 5 to 17 years old who are diagnosed with OSA and have not been successful with a CPAP.  Hosted by several medical centers across the U.S. For more information, see the flyer. Contact: suzanna.hicks@cchmc.org. 
  • (Espanol) Multilingualism and Down Syndrome Online Survey, this study is looking for Spanish-speaking caregivers of children with Down syndrome 5 years old and younger. See flyer in English and link in Spanish. Contact: dcf2@illinois.edu 
  • Infant Movement Study, by Boston University's Infant Communication Lab is looking to better understand everyday movements and acivities of infants with Down syndrome. For more information, see the flyer. Contact: buicl.studies@gmail.com
  • IDD ToolKit, by Vanderbilt Kennedy Center is assessing the perspectives of primary care providers, adults with intellectual and developmental disabilities (IDD), and their family/support persons on the IDD Toolkit, a website that includes information for primary care providers, adults with IDD, and their family/support persons to support the health care for adults with IDD. Open to all adults with intellectual disabilities, caregivers and medical professionals through October 2025. See the flyer. Contact: verity.rodrigues@vumc.org
  • 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. See the 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. See the flyer. Contact:  giselle.singer@mssm.edu
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