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Evaluating Patient Health Outcomes in Rare Diseases

Hastings Investigator: Sarah McGraw

Subcontract from Brigham and Women’s Hospital

The purpose of this project was to plan and carry out a symposium and write a journal supplement on research methods for understanding health outcomes in rare diseases. Dr. McGraw conducted focus groups with patient representatives, eliciting their views about what innovative methods exist – and what methods are needed – to assess the effectiveness and safety of rare disease therapeutics. She carried out a qualitative analysis and collaborated with a team at Brigham and Women’s Hospital to produce a manuscript on the findings, “Development and Use of Therapeutics for Rare Diseases: Views from Patients, Caregivers, and Advocates,” The Patient, February 2015.