Jumping into the Research Subjects Pool
Patricia Dautel Nobbie, PhD, Director, Disability Policy Engagement, Anthem, Inc.

The emphasis on health disparities has been accompanied by a need for greater diversity in the research subjects pool, posing the question, “On whom are we basing our knowledge of the needs of diverse communities and people?”  Historically, our knowledge base has been skewed toward white middle-class male subjects.  

I was so excited for my daughter Mia who has Down syndrome to participate in a research study at Vanderbilt University to prepare a “study-ready cohort” of individuals aged 35 years and older with Down syndrome. This cohort is being developed for future research on the relationship between Down syndrome and Alzheimer’s disease. People with Down syndrome are at 60% higher risk for early onset Alzheimer’s.  The cohort will consist of 125 people from the U.S., Spain, and Great Britain along with their demographic and health records, including MRI brain scans and Pet Scans of Tau and Amyloid proteins. The cohort will be available for researchers and clinicians working to develop potential treatments for Alzheimer’s and to study how people with Down syndrome might respond to these treatments.  

The process has been enlightening. I have seen how Mia has actively participated in the study and I have learned a lot about how to prepare people with IDD to participate in research. This research opportunity exemplifies “Nothing About Us Without Us!” 

Zach Rossetti, PhD
Associate Professor of Special Education, Teaching and Learning Department,
Boston University, Wheelock College of Education & Human Development

Member since 2010

Why did you join AAIDD?

I joined AAIDD because of the mission and especially the longstanding emphasis on listening to and supporting individuals with IDD and their families. Through family-professional collaboration, advocacy, policy, and research, AAIDD promotes human rights and school and community inclusion for all people with IDD. AAIDD cultivates a network of individuals with IDD, their families, and professionals dedicated to directly improving the quality of life and self-determination of people with IDD.   

Why did you choose the field of intellectual disability?
I believe the field of intellectual disability chose me. I am the oldest of six in my family; my brother Todd, considered to have had multiple disabilities, was the fourth of the six. Todd was a huge Boston sports fan, loved chocolate cake, and was very social. That he was so outgoing was even more impressive because he did not speak, used a wheelchair, and needed support throughout his day due to his cerebral palsy. Communicating and connecting with others without speaking is one of many lessons he taught me. I also learned early on that others did not always view Todd as I did. Beyond the stares while in public and the teachers who talked to him as if he were much younger than he was, I always questioned the establishment of his intellectual disability because he was assessed without a means of communication. Todd could have and should have experienced more rigorous academic and social experiences in school. Too many people missed out on the privilege of truly knowing Todd.