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PRO-ACTive sharing of clinical data

Nature Biotechnology volume 40, pages 999–1000 (2022)Cite this article

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To the Editor — The open sharing of clinical data for research poses challenges not only in resolving consent, privacy and intellectual property issues associated with trial results1,2, but also in subsequently facilitating access to and utilization of the data. Controlled-access systems can place onerous restrictions on industry-based researchers, require arduous application processes and involve long review or authorization times for users. Indeed, analyses of major efforts, such as ClinicalStudyDataRequest.com (CSDR)3,4 and the UK Health Research Authority’s (HRA) Assessment Review Portal (HARP) database5, suggest that fewer than 50% of the available trial datasets in these resources have been accessed and analyzed by researchers after launch. Here, we outline several strategies that ensured that researcher-engagement with an open-access ALS clinical trial data resource reached its full potential. We hope that our insights will be instructive for others seeking to galvanize open clinical data sharing efforts within the broader research community.

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Authors and Affiliations

  1. Takeda Pharmaceuticals, Cambridge, MA, USA

    Neta Zach

  2. Accelerating NeuroVentures, LLC, Needham, MA, USA

    Melanie L. Leitner

Authors
  1. Neta Zach
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  2. Melanie L. Leitner
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Correspondence to Neta Zach.

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Competing interests

N.Z. is an employee of Takeda Pharmaceuticals.

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Zach, N., Leitner, M.L. PRO-ACTive sharing of clinical data. Nat Biotechnol 40, 999–1000 (2022). https://doi.org/10.1038/s41587-022-01395-y

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  • DOI: https://doi.org/10.1038/s41587-022-01395-y

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