Leads: Paul Lipkin, Kiely Law (Interactive Autism Network PPRN)
Co-Lead(s): Beth Malow (Mid-South CDRN)
Parent/Patient Lead: Lori McIlwain (National Autism Association)
The Autism Research Group (RIG) consists of patient-powered (PPRN) and clinical data research networks (CDRN) with special interest in research focused on children and adults with autism spectrum disorders and related conditions. The Autism RIG aims to develop projects directed towards the wide-ranging health, educational, and community needs of those affected, including family members, through investigations offering both clinical and participant- or family-derived data. Current member organizations include the Interactive Autism Network, PEDSnet, the Phelan McDermid Syndrome Network, and the Mid-South CDRN, One Florida, and PORTAL. The RIG seeks to expand its membership from within current PCORnet/PCRF networks, as well as through participation of other national ASD networks. Members will explore currently available datasets from within CDRNs and PPRNs and look to expand other data options for identifying important and meaningful measurable research outcomes in ASD. A computable phenotype for ASD will be explored for large-scale research on clinical data sets. Current projects include development of a standardized sleep measure in conjunction with a PEDSnet project in a broader pediatric sample. Other research topics of importance and feasibility will be identified for the launch of the Autism RIG in 2017 and 2018.
Prioritization of condition-specific research topics:
- The process will involve multiple stakeholders from the ASD community: researchers, clinicians, patients, and family members
- An online platform will be used that will allow participants to rank and edit research topics.
- If you would like to take part in this activity, please send us an email at firstname.lastname@example.org