Cancer Screening for People With Intellectual Disability: Exploring Parent and Caregiver Perspectives

Survey for parents and caregivers to share perspectives on cancer screening for people with intellectual disabilities

Study Contact Information:

Jennifer Ryan,

About the Study

Our goal is to understand the experiences of people with intellectual disability in regard to screening for cancer, for example colonoscopies for colon cancer and mammograms for breast cancer. For people not being screened, we hope to learn about any barriers faced. We want to provide parents and caregivers the opportunity to share their thoughts and opinions on this topic. Participants will complete an online, 20-minute survey.

This study is no longer recruiting patients. 


What the Study Involves

The study consists of a one-time online survey, which will take about 20 minutes to complete. The survey should be completed by the parents or caregivers of the person with intellectual disability. Caregivers include anyone besides the biological parent that is the primary caregiver for the person (i.e., sibling, grandparent, aunt/uncle, non-relative guardian, etc.) The person with the disablility is encouraged to work with their family member or caregiver to complete the survey if desired. Click this link to take the survey or scan the QR code. 


Principal Investigator: Jennifer Ryan, B.S.
Graduate Student
Master of Science in Genetic Counseling
University of South Carolina, School of Medicine

Faculty Advisor: Amy Wardyn, MS, CGC
Assistant Director, Thesis Research
Clinical Assistant Professor
University of South Carolina
Two Medical Park, Suite 103
Columbia, SC 29203

Committee Member: Ashley Kaminksi, MS, CGC
Genetic Counselor, Ambry Genetics
Concord, NC

Committee Member: Sara Elrefai, MD
Clinical Geneticist, Atrium Health, Levine Cancer Institute
1021 Morehead Medical Drive, Suite 2300
Charlotte, NC 28204

This Study is Open To:

This study is no longer recruiting patients. 

This Study is Not Open To:

This study is no longer recruiting patients. 


FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.