How to capture the patients and caregivers perspectives in rare diseases?
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How to capture the patients and caregivers perspectives in rare diseases?

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Benoit  Arnould ,  Senior Director, Patient-Centered Outcomes,  MAPI  Group  joined us at the  World Orphan Drug Congress USA 2016  to detail why PROs in rare disease research and the challenges for patient-centered outcomes research in rare diseases, which include:

  • Generic measures inappropriate
  • Functional limitations to Self-Reporting
  • Conceptual model too rich and complex
  • Issues for testing quantitative scores

Join us at the  World Orphan Drug Congress USA 2017  to hear more about PROs >>