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Patient-Centered Outcomes Research Institute (PCORI)

The Patient-Centered Outcomes Research Institute (PCORI) is an independent organization created to help patients, clinicians, purchasers and policy makers make better informed health decisions. PCORI will commission research that is responsive to the values and interests of patients and will provide patients and their caregivers with reliable, evidence-based information for the health care choices they face.

PCORI is committed to transparency and a rigorous stakeholder-driven process that emphasizes patient engagement. PCORI will use a series of forums and formal public comment periods to increase awareness of its work and obtain public input and feedback prior to adoption of priorities, agendas, methodological standards, peer review processes or dissemination strategies.

NORD worked hard during health reform to ensure that any rare disease research that is conducted by PCORI will be a special advisory committee on rare diseases.  The rare disease advisory committees will aide in the design of the research study and must include scientific and health services experts, clinicians, patients, and others with expertise in rare diseases.  Statutory language outlining these requirements may be found here.

NORD will continue to work closely with PCORI as it gets up to speed to ensure that individuals with rare diseases have maximal input and benefit from the good work that PCORI will do.

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