Study Eligibility

Researchers are seeking 180 adults with Down syndrome and 40 siblings to participate in a study entitled, “Neurodegeneration in Aging Down Syndrome.” The study involves both cognitive testing and scans of the brain via a MRI and PET.

Study Criteria for Individuals with Down Syndrome

  1. Trisomy 21 diagnosis
  2. Age 25 years of age and older
  3. Reliable caregiver (such as a parent or sibling) who is capable of providing correct information about the subject’s clinical symptoms and history must accompany the individuals with Down syndrome to all visits.
  4. Agreement of caregiver and clinician that the subject is able to cooperate with the protocol tasks

Study Criteria for Siblings of Individuals with Down Syndrome

  1. Age 25 or older
  2. Willingness to cooperate with the protocol tasks
  3. No evidence of MCI or dementia
  4. Must be the full biologically related sibling to individual with Down syndrome who is a study participant

Study Details

The study will consist of four visits over a 4 year period. Each visit will take approximately two days to complete. A relative or caregiver will complete a set of questionnaires while the adult with Down syndrome undergoes a physical examination and completes a range of cognitive tests. Some of the visits will also include an MRI and PET Scans. In addition, there will be a blood draw. Sibling visits will take approximately one day with similar testing, scans, and blood work.

Participants will be compensated for their time and expenses. Funds are available for participants and caregivers who reside a distance from the site to stay overnight. For additional information please contact the site closest to you:

University of Pittsburgh Medical Center
Cathy Wolfe, MEd, BCBA
412-235-5412
wolfec@upmc.edu
Waisman Center (Madison, WI)
University of Wisconsin – Madison
Renee Makuch
608-262-4717
makuch@wisc.edu

University of Cambridge (Cambridge, England)
Concepcion Padilla, PhD
01223 746127
cfp31@medschl.cam.ac.uk
Barrow Neurological Institute (Phoenix, AZ)
Sandy Quintanilla
602-406-7054
Sandy.Quintanilla@DignityHealth.org

 

US Studies United Kingdom

Study funded by the National Institute on Aging (NIA) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

Waisman Center Barrow Cambridge