Cancer Screening Survey for People with I/DD

VOR received this request for participants in a survey of parents and caregivers of people with I/DD (Intellectual and Developmental Disabilities) regarding cancer screening for people with I/DD.

From VOR:

We received a request from a young woman who is conducting a survey on cancer screening of people with intellectual disabilities for her Master's Thesis. Her letter and a link to the study are attached below.

We hope that those of our members who have loved ones with I/DD who have had cancer screenings will participate in this study, not only to help protect the interests of the I/DD population as a whole, but to make sure that those with more severe/profound I/DD and autism are well represented in the study.

[to contact VOR, email info@vor.net]

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To Whom It May Concern,

My name is Jennifer Ryan, and I am a second year Master’s Student in the University of South Carolina Genetic Counseling Program. For my thesis research, I am working to survey parents and caregivers of patients with intellectual disability in regard to patients’ experiences with cancer screening.

Patients with intellectual disability have around the same risk to develop cancer during their lifetime compared to the general population, but are screened for cancer at much lower rates. Through my research, I am hoping to gather family and caregiver perspectives and opinions in order to break down barriers to care and to provide resources to these individuals to help them obtain routine screenings.

A poster about my research is attached and the link to complete the survey is: https://redcap.healthsciencessc.org/surveys/?s=L8MX44TYMHFHN3YE.

Thank you for your time and consideration. Please feel free to reach out to me if you have any questions about the project.

Best,
Jennifer Ryan

Please contact jlr19@uscmed.sc.edu with any questions