Creating online communities to increase research opportunities and support families

Registries are used often in public health to understand health issues, answer targeted research questions, and to link the research and clinical communities. The major limitations of traditional clinician and public health registries is the lack of engagement of the patient community; the lack of incentives for busy clinicians to update the information; and the focus on specific research questions which may miss other research options. A new model of patient-based registries was employed in the development of Duchenne Connect www.duchenneconnect.org and Simons VIP Connect www.simonsvipconnect.org . Both of these registries use the internet to engage families who are motivated to provide current information; especially when they can immediately see the aggregate results and compare their child to other children with the same condition. Parents who register their children are usually the type motivated to participate in research. This makes it easier for researchers to recruit. The questions posed to the families are designed to provide a basic description of the conditions and participants update the information on a regular basis to help describe the natural history of the condition. Also the participants can propose questions to the community which may result in new research questions and/or identify unmet needs of the community. This session will describe how these two websites were developed. It will also briefly discuss other patient-based websites that are changing the way we think about registries.