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A call for an integrated approach to improve efficiency, equity and sustainability in rare disease research in the United States

Nature Genetics volume 54, pages 219–222 (2022)Cite this article

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To build a more efficient, equitable and sustainable approach to rare disease research in the United States, we must prioritize integrated research infrastructure and approaches that focus on understanding connections across rare diseases.

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Acknowledgements

Funding for this research was provided by the US National Human Genome Research Institute, grant numbers K01HG011341 (M.C.H.) and K99HG011491 (H.S.S.); the National Institutes of Health Common Fund, Office of the Director, grant number U01HG010218 (E.A.A.); and the National Center for Advancing Translational Science, grant number UL1TR003142 (H.K.T.).

Author information

Author notes

  1. These authors contributed equally: Aaron J. Goldenberg, Holly K. Tabor.

Authors and Affiliations

  1. Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, CA, USA

    Meghan C. Halley & Holly K. Tabor

  2. Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA

    Hadley Stevens Smith

  3. Department of Genetics, Division of Cardiovascular Medicine, Stanford University School of Medicine, Stanford, CA, USA

    Euan A. Ashley

  4. Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, OH, USA

    Aaron J. Goldenberg

  5. Department of Medicine, Stanford University School of Medicine, Stanford, CA, USA

    Holly K. Tabor

Authors
  1. Meghan C. Halley
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  2. Hadley Stevens Smith
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  3. Euan A. Ashley
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  4. Aaron J. Goldenberg
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  5. Holly K. Tabor
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Corresponding author

Correspondence to Meghan C. Halley.

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Competing interests

E.A.A. is a non-executive director at AstraZeneca. The other authors declare no competing interests.

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Nature Genetics thanks Joseph T. Shieh, Anne O’Donnell-Luria, and Tiina Urv for their contribution to the peer review of this work.

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Halley, M.C., Smith, H.S., Ashley, E.A. et al. A call for an integrated approach to improve efficiency, equity and sustainability in rare disease research in the United States. Nat Genet 54, 219–222 (2022). https://doi.org/10.1038/s41588-022-01027-w

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