How can real-world data, registries, and databases address the challenges of rare diseases?

Sara E. Mole; Emily Gardner; Heather Mason

Volume 34, Issue 1 - Rare Diseases

How can real-world data, registries, and databases address the challenges of rare diseases?

Authors: Sara E. Mole, Emily Gardner, Heather Mason

Abstract

A goal for all diseases is a treatment that works to prevent, halt, or reverse their effects – essentially, a cure. Achieving this requires early diagnosis, knowledge of disease mechanisms, and effective treatment. For rare diseases, each of these elements is a huge challenge. This perspective explores how real-world and registry data can address these obstacles and considers future developments with the potential for the most significant impact.

Medical Writing. 2025;34(1):46–50. https://doi.org/10.56012/kwle5627

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Volume 34, Issue 1 - Rare Diseases

How can real-world data, registries, and databases address the challenges of rare diseases?

Authors: Sara E. Mole, Emily Gardner, Heather Mason

Abstract

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