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BMJ· 2026Q1

Rare diseases: NHS labs fail to share data vital for diagnosis and care, BMJ finds

Jennifer Richardson

Short summary

Three of England's seven NHS Genomics Laboratory Hubs lack resources to share data vital for rare disease diagnosis and care, despite good intentions, according to a BMJ report.

AI-generated from the title and abstract; the full text is not read.

Key points

  • Three of seven NHS Genomics Laboratory Hubs in England lack resources for data sharing.
  • Guidance on information sharing for rare diseases is not being fully implemented.
  • Delays in data sharing prolong patient uncertainty and delay treatment.
  • Experts and families are concerned about the impact on rare disease patients.

AI-generated from the title and abstract; the full text is not read.

Abstract

Three of England’s seven NHS Genomics Laboratory Hubs say they lack the resources to implement key guidance on information sharing, despite good intentions. Experts and families say the delay could be prolonging uncertainty and delaying treatment for patients with rare diseases, Jennifer Richardson reports

The authors' abstract, as published at the source. BMJ, 2026 · DOI ↗

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Field: Health Information Management

Health Information ManagementHealth Professions