What would you want to know about genetic testing? A short survey for siblings and parents of adults with developmental disabilities

Karen Edwards, a colleague at the Westchester Institute for Human
Development's LEND (Leadership Education in Neurodevelopmental and Related
Disabilities) program, has asked me to forward this announcement to adult
sibs and parents. The Westchester Institute for Human Development is a
University Center for Excellence in Developmental Disabilities. You can
learn more about the Institute at http://www.wihd.org/index.html

I have met Karen and have been impressed with her commitment to sibs and
their concerns. Please consider participating and sharing the following
announcement with other sibs and parents you may know!


Are you a sibling or parent of an adult (18 years or older) with a
developmental disability? If so, we invite you to complete a 10-15 minute
anonymous survey. We are interested in learning what, if anything, you would
like to know about genetic testing for individuals with a developmental
disability. The results of our survey will help guide health care
professionals in discussing genetics issues with families like your own.

Faculty, trainees, and families associated with the Leadership Education in
Neurodevelopmental and related Disabilities (LEND) Training Program at
Westchester Institute for Human Development and the School of Public Health
at New York Medical College created this survey. New York Medical College's
Office of Research Administration reviewed and approved it.

If you are interested, please complete the online survey at:

For siblings: <https://www.surveymonkey.com/s.asp?u=386531821871>

For parents: <https://www.surveymonkey.com/s.asp?u=974313231719>

Thank you.

Karen Edwards MD MPH and Patricia Patrick MPH

LEND Research Team Leaders

Westchester Institute for Human Development

Valhalla NY 10579

Karen Edwards MD MPH

LEND Program Director, WIHD

Cedarwood Hall Room 332


Associate Dean for Primary Care

Office of Undergraduate Medical Education

Munger Suite 600

New York Medical College

Valhalla NY 10595


This entry was posted in Correspondence, Research & Surveys and tagged . Bookmark the permalink.

Comments are closed.