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. 2024 Aug 22:316:1262-1263.
doi: 10.3233/SHTI240641.

Development of a Maturity Model for Medical Patient Registries - A Community Approach

Anna Niemeyer  1 , Anne C Regierer  1   2 , Tobias Hartz  1   3 , Christof Veit  4 , Neeltje van den Berg  5 , Irina Beckedorf  1 , Irene Schlünder  1 , Emily Neubauer  1 , Wolfgang Hoffmann  1   5 , Sebastian C Semler  1 , Rainer Röhrig  1   6 ; TMF WG Medical Registries
Affiliations

Development of a Maturity Model for Medical Patient Registries - A Community Approach

Anna Niemeyer et al. Stud Health Technol Inform. .

Abstract

Objective: Development of a generic model to visualize the potential for use and further development of registries to assess the suitability of the registry for a specific purpose.

Methods: Multi-stage community approach.

Results: The maturity model has 9 categories with 105 items. The purpose of the registry is mapped via potential usage dimensions.

Conclusion: Important for acceptance is the appropriateness of the requirements in relation to the purposes.

Keywords: patient registry; regulatory science; research infrastructure.

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