PCORI Patient-Centered Outcomes Research Institute (PCORI)

A nonprofit, nongovernmental organization located in Washington, DC. The PCORI mandate is to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions.

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http://www.pcori.org/

JS-LIFE Research

JS-LIFE is a database designed and supported by the Joubert Syndrome and Related Disorders Foundation (JSRDF) to advance research on the health and well-being of people with Joubert Syndrome. We invite you to collaborate with JS-LIFE participants and their families, disease advocates, medical researchers, and healthcare providers to design a research study to address important issues for people living with Joubert Syndrome. The research study will use information collected and shared in the JS-LIFE database.