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Fig. 1 | Orphanet Journal of Rare Diseases

Fig. 1

From: Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centered outcome measures

Fig. 1

PCOMs bring value across all healthcare stakeholders. Evaluating value from the perspective of the patient can bring substantial benefit for all healthcare stakeholders. Because they are grounded in what matters most to patients, PCOMs help translate care and/or observed treatment effect into an ‘interpretable’ measure of patient benefit. By doing so, PCOMs bring value to all healthcare stakeholders involved. PCOMs may be used for several purposes, such as: efficacy endpoints in clinical trials, outcomes measures in registries, guides to treatment choices for daily care, or tools to monitor care delivery

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172