The IDeaS initiative: pilot study to assess the impact of rare diseases on patients and healthcare systems.

Journal: Orphanet journal of rare diseases
Published Date: Oct 22, 2021

Abstract

BACKGROUND: Rare diseases (RD) are a diverse collection of more than 7-10,000 different disorders, most of which affect a small number of people per disease. Because of their rarity and fragmentation of patients across thousands of different disorders, the medical needs of RD patients are not well recognized or quantified in healthcare systems (HCS).

Authors

  • Ainslie Tisdale
    Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, 20817, USA.
  • Christine M Cutillo
    NCATS NIH, Bethesda, MD, 20817, USA.
  • Ramaa Nathan
    Eversana Life Science Services, LLC, Chicago, IL, USA.
  • Pierantonio Russo
    Eversana Life Science Services, LLC, Chicago, IL, USA.
  • Bryan Laraway
    Oregon Health and Science University (OHSU), Portland, OR, 97239, USA.
  • Melissa Haendel
    Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, Portland, OR 97239, USA.
  • Douglas Nowak
    Sanford Health, Sioux Falls, SD, 57117, USA.
  • Cindy Hasche
    Sanford Health, Sioux Falls, SD, 57117, USA.
  • Chun-Hung Chan
    b Hong Chi Morninghill School , Tsui Lam , Hong Kong S.A.R.
  • Emily Griese
    Sanford Research, Sioux Falls, SD, 57104, USA.
  • Hugh Dawkins
    The Office of Population Health Genomics, Department of Health, Government of Western Australia, Perth, WA, Australia.
  • Oodaye Shukla
    HVH Precision Analytics, Wayne, PA, USA.
  • David A Pearce
    Sanford Health, Sioux Falls, SD, 57117, USA.
  • Joni L Rutter
    NCATS NIH, Bethesda, MD, 20817, USA.
  • Anne R Pariser
    Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, 20817, USA. anne.pariser@nih.gov.

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