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August 19, 2015Journal of Public HealthOpen Access

Consensus on the criteria needed for creating a rare-disease patient registry. A Delphi study

Clara Cavero‐Carbonell Elena Gras‐Colomer Rosana Guaita-Calatrava Carmen González López-Briones Rubén Amorós I. Abaitua Manuel Posada de la Paz Óscar Zurriaga

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Abstract

The consensus method used made it possible to define the characteristics of a PR based on expert opinion within a rare-disease framework. This study may serve as a guide for helping other researchers plan and build a rare-disease PR.

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Cite This Study

Cavero‐Carbonell et al. (2015) studied this question.

synapsesocial.com/papers/69da291f94a959ed41a3c241 https://doi.org/10.1093/pubmed/fdv099

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