Research, the Center's third area of service, answers the need for non-intrusive studies by professionals from accredited institutions studying Down syndrome. Using the resources of the Center, scientists have opportunities to develop theories about Down syndrome and related medical conditions, gather data, and publish scientific papers that benefit the entire world community.

All studies are subject to parental/guardian consent and meet strict criteria established by the Village's Human Rights Committee, the Board of Directors, and the State Office of Mental Retardation and Developmental Disabilities.

At present, the Kennedy•Willis Center on Down Syndrome is a research partner with the New York State Institute for Basic Research in Developmental Disabilities on Staten Island. Ongoing studies at the Kennedy•Willis Center include:

• Alzheimer's Disease in Persons who have Down Syndrome: Investigators conducted clinical evaluations of older Village residents to document changes over time in learning and memory, and have analyzed blood samples to determine the levels of certain proteins. This project has been incorporated into a long-term study supported by the National Institutes of Health to discover markers that may predict the onset of Alzheimer's disease. Researchers: Pankaj D. Mehta, Ph.D., and Arthur J. Dalton, Ph.D., IBR.

• Aging in Adults who have Down Syndrome: Investigators tracked a group of older Pathfinder Village residents, to document changes in memory, cognition, and physical changes that are associated with the typical aging process. Researchers: Darlynne A. Devenny, Ph.D. and Sharon J. Krinsky-McHale, Ph.D., IBR

• Self-Talk in Adults who have Down Syndrome: Researchers are observing the frequency, triggers, and role Self-Talk has for adults who have Down syndrome, and how this phenomena fits in with positive self-image. Researcher: Paul J. Patti, MA, IBR.

• A Gastro-Intestinal Survey of People Who Have Down Syndrome: Researchers are using newly developed, simply conducted tests for gastro-intestinal conditions to determine the frequency and severity of digestive disorders associated with Down syndrome.

  Researchers: Maureen Gavin, RN, and Paul J. Patti, MA, IBR

• Estrogen-Loss Studies on Women with Intellectual Disabilities: Researchers are comparing the levels of estrogen-loss between older women who have ID and those who represent the general population, with hopes of gaining new insight into conditions that beleaguer post-menopausal women. Researchers: Nicole Schupf, Ph.D., P.H., and Deborah Pang, M.P.H., joint study by Columbia University and IBR.

Contact the Center for details by e-mail or telephone:
(607) 965-8377 ext. 128