April, celebrated as Autism Acceptance Month, offers an excellent opportunity to highlight the vital role PCORnet® plays in supporting research on intellectual and developmental disabilities (IDD). A recent data report shows the capacity of the PCORnet infrastructure to support such research, revealing that clinical sites in PCORnet® Clinical Research Networks (CRNs) provide services to over 62,000 individuals with autism and more than one million patients with attention deficit hyperactivity disorder (ADHD).
A personal connection
Brittney Manning is the director of Research and Operations for OneFlorida+, one of the PCORnet® CRNs involved in the data report query. Brittney manages the day-to-day operations, strategic planning, and clinical research projects in OneFlorida+, including those focused on IDD. Her interest in this type of research is also personal.
In 2023, Brittney’s 5-year-old son was diagnosed with type 1 autism. She felt lucky to live in Gainesville, Florida, a small town with a large academic medical center and more resources than other areas of Florida. “In some parts of the state, it’s very hard to find support groups. It’s hard to find resources, or maybe it’s even hard to get a diagnosis,” Brittney said. Even in Gainesville, it took her a year to get an appointment and receive a formal diagnosis for her son.
Brittney’s experience with her son’s diagnosis emphasized the importance of her work with OneFlorida+ and PCORnet. “I think the more intellectual and developmental disabilities are talked about and researched, and the more data becomes available nationwide, the faster we can improve healthcare for people living with these conditions,” she said.
Bringing new insights to light for IDD communities
The IDD report is a major resource for Brittney. In her work, she helps researchers determine what data is available and supports them in navigating from their research question to a grant application or proposal. “I think sometimes researchers are intimidated by PCORnet because it's so big and there's so much data,” she said. “Resources like the IDD data report offer a fabulous way to just start digging in and seeing what you can do.”
New funding pathways for IDD research are available, too. On April 1, the Patient-Centered Outcomes Research Institute® (PCORI®) released several funding opportunities, including one focused on research related to people with IDD, with special emphasis on oral health, gastrointestinal health, and improving care delivery. PCORI invites all interested investigators, regardless of affiliation or source of funding, to utilize the PCORnet infrastructure to support both interventional and observational research addressing health issues faced by people with IDD.
Ready to get started? If you’re interested in conducting national-scale research into IDD, contact the PCORnet® Front Door to start the conversation.