The REALS (Relationships Employment Autonomy Life Satisfaction) Study
Funded by: Autism Speaks, Eunice Kennedy Shriver
National Institute of Child Health & Human Development (NICHD) of the National Institutes of Health (NIH)
Principal Investigators: Carla A. Mazefsky, PhD, Shaun M. Eack, PhD
Status: Active, but enrollment is closed
What is the study about?
The goal of this research study is to develop a new survey tool to measure aspects of real adult life in autistic adults and adults with intellectual and developmental disabilities (IDD). This measure will assess relationships, employment, and autonomy/independence, as well as life satisfaction. This scale will be called the REALS scale.
This study is important because most research and survey measures have focused on children. This limits the ability of researchers and policy makers to make key service decisions and progress for autistic adults and adults with intellectual and developmental disabilities.
This measure will be the first adult measure of these domains designed specifically for autistic adults and adults with other neurodevelopmental and intellectual disabilities. This measure was developed in partnership with autistic community members and our PAARCC group.
What did we learn from this study?
Enrollment has closed. Analyses are ongoing and results are pending.
Will my information be kept private?
The data we collect from study participants are secure and private. This means that we do not have your name written anywhere on the data. We use a random number. So, instead of having data, for example, that is called “John Smith interview”, it might be called “#101 interview”.
- The file that links your name to the data is stored separately and not shared.
- We do not collect data from your medical records.
- We do not have access to your medical records.
- We are not putting data or diagnoses into your medical records.
- Your name, address, and other information that can identify who you are is not shared with the government or any funder or collaborator.
If you provided consent to our collaborators at Drexel University to access your Medicaid Claims data, this is handled entirely by Drexel. They follow the same procedures to protect your privacy. They also use a number instead of your name and they do not share information that can identify you. They keep your identifying information separate from your Medicaid data.
How do I find out more?
Contact Project Coordinator at AFSstudy@upmc.edu