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AncestreeGP

Marco

John

Joshua

Lucy

Kim

Melvin

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The Problem

  • Problem: Family history data is sparse and inaccurate on GP records
  • Why is this important? Family history plays a crucial role in assessing disease risk, and its significance is growing with advancements in genomics.
  • What are we trying to achieve? To connect and visualise individuals in a family tree structure to assess their risk of inheritable diseases?
  • Who is this for? GPs and patients

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Flowchart

TPP SystmOne

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Demo

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Final GP System implementation

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Ethical issues and other considerations

  • Laws on personal data processing / Information Governance / Consent
  • Ethics of sharing information on genetic diseases
  • Missing / inaccurate data / verification of family networks
  • Widening health inequalities for people on / not on the system
  • NHS data access and linkage / scalability. Might be difficult at first, will improve as genomics progresses

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What we have learned

  • Family linkages should distinguish between genetically related and marriage related
  • Genetic sex is important
  • Assembling diagnosis information is challenging, as family members often aren't registered at the same GP practice.
  • The aim should be to visualize the prevalence of a disorder in an individual's pedigree, showing affected relatives' degree and allowing focus adjustment within the pedigree.
  • GP systems can link related people, but this feature is underused and currently unlikely to be helpful.
  • We focus on individuals, assuming family consent, to ensure high-quality information for each person's pedigree.

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Code for GP System implementation so far

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AncestreeGP Project Next Steps

  • Create program which generates graph of risk of disorders from family networks ✅
  • Create an API which retrieves family disorder data from GP system 🟧
  • Clarify precisely from where family disorder data will be obtained 🟧
  • Get permission to access family disorder data from GP Systems ⏩
  • Get permission from users to access / process their data - Maybe through a website or form ⏩
  • Get data on family networks - From users through a website or form ⏩
  • Verify family networks using cross-checking or legal documents in a website or form if necessary ⏩