PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.
Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including the Interactive Autism Network (IAN), participated as Partner Networks in PCORnet.
PCORI funded IAN’s participation in PCORnet from 2015 to 2019. This report outlines IAN’s achievements in building its research infrastructure capacity to
- Create ways to involve patients, families, and caregivers in decision making about the network
- Create a way to collect and share data reported by patients for research
- Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies
- Lead or join in research studies that focus on the community’s priorities
Network at a glance
IAN aimed to improve the understanding and treatment of autism spectrum disorder (ASD) through research. ASD affects how people act and interact with other people, as well as how they communicate and learn. Led by the Kennedy Krieger Institute in partnership with the Simons Foundation, IAN included data for more than 59,000 people on the autism spectrum and their families.
|Interactive Autism Network (IAN)
|Patient-Powered Research Network (PPRN)
|Kennedy Krieger Institute
|59,727 individuals on the autism spectrum and their families
|Area(s) of focus
|Autism spectrum disorder
How does the network operate?
IAN’s network operations were put together by those who started IAN, including parents of children with ASD, the Kennedy Krieger Institute, and funders. Network operations included a Science Advisory Board (SAB) and a Community Advisory Council (CAC). The SAB guided the development and execution of key research and community activities. It consisted of six members from other organizations, including Autism Speaks, the Simons Foundation, the Kennedy Krieger Institute, and the Johns Hopkins School of Medicine. The CAC had 62 members from the ASD community and consisted of two teams. The first CAC team included parents of children with ASD, parents who care for adult children with ASD, adult siblings of people with ASD, and adults with ASD who live on their own. This team held quarterly conference calls focused on helping to shape IAN’s research agenda. The second CAC team included people who work in the ASD community, family members and caregivers, health professionals, and community advocates. This second team provided input on research topics and community articles through surveys, polls, and online focus groups.
How did the network involve patients and other partners?
People living with ASD, parents of children with ASD, family members of people living with ASD, and other caregivers work throughout the IAN network.
IAN built the IAN Community, an online resource for people with ASD and their families to learn about ASD research. The IAN Community helped people with ASD and their families to
- Understand the research process
- Keep up with the latest research findings, news, and events
- Understand the value of participating in autism research
- Influence the direction of research
IAN released questionnaires to collect patient, sibling, and caregiver data on various topics, such as social responsiveness and parental depression. In addition, IAN reached out to families to notify them of, and match them to, potential opportunities to participate in research studies.
Who is in the network?
IAN had 59,727 enrolled participants as of December 31, 2018. While a Partner Network in PCORnet, IAN participated in 10 studies.
|Population (as of 12/31/18)
- 75% white
- 4% black or African American
- 3% mixed race
- 2% Asian
- 1% other
- 5% no information
- 9% Hispanic or Latino
- 36% 17 years or younger
- 40% 18–44 years
- 24% 45–64 years
- 1% 65 years or older
Sex assignment at birth
How does the network support future research?
PPRNs follow PCORI standards to enhance the sustainability of the network, including fostering patient and clinician engagement at all stages of the research process, participating in multinetwork PCORnet research, and building external collaborations. Going forward, IAN is partnering with SPARKforAustim.org, another autism network, funded by the Simons Foundation.
Institutional Review Board (IRB): A group that follows federal regulations, state laws, and institutional policy to review, monitor, and approve research in order to protect the ethical rights and privacy of the subjects involved.
Patient-Powered Research Networks (PPRN): PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.
PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.