Family History Toolkit

Provides tools and best practices for documenting family health history information

Your family health history includes the health conditions experienced by your family members over the course of their lifetimes. This information helps genetic counselors and other clinicians identify a patient’s disease risk — and sometimes prevent disease from developing at all. But gathering family health history is time-consuming. Electronic tools can help patients put together their family health history before visiting the clinic, saving time.

Compiled by the GA4GH Clinical & Phenotypic Data Capture Work Stream, the Family History Toolkit offers an inventory of tools that capture family health history and a statement of best practices that covers approaches and challenges to using this information in clinical care systems.

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  • Provides an inventory of consumer products used to capture family health history
  • Outlines key considerations when designing family history collection and analysis tools

Target users

Researchers, clinicians, research participants & patient communities, and public

Community resources

Dive deeper into this product! The goal of family history collection within medical practice is to improve patient care. Family history plays a central role in assessing patterns of disease inheritance and estimating a patient’s risk of developing specific conditions. The Family History Tools aids practitioners in finding and structuring more usable family health history data. This resource includes an inventory of electronic products that patients use today to capture their family health history, including products that integrate with electronic health records (EHRs). A document about best practices outlines current approaches to data collection and their challenges. This document also provides key considerations for designing family history collection and analysis tools.

Don't see your name? Get in touch:

  • Ed Conley
    The Farr Institute
  • Megan Doerr
    Sage Bionetworks
  • Jeff Greenberg
    Kaiser Permanente
  • John Mattison
    Kaiser Permanente
  • Ingrid Winship
    The Royal Melbourne Hospital
  • Grant Wood