About UKHR

Our research programmes provide a beacon of hope for the many children and adults battling Histiocytosis, to ensure this research continues we ask you to support the UK Histio Registry.
Thank you.

About UKHR

The aims of UKHR are:

  • Establish a cohort of well-characterized histiocytosis patients to facilitate epidemiological, natural history and health economic studies.
  • Provide information about the incidence, demography and healthcare burden of histiocytosis to facilitate planning, commissioning and resource allocation.
  • Learn more about the value of genotyping in disease subtypes, risk factors, response to therapy and personalised medicine.
  • Promote more consistent diagnoses, develop guidelines for best practice, and facilitate entry into trials.
  • Encourage collaborative research nationally and internationally on histiocytosis.

Patients enrolled into the registry will be consented for:

  • Collection of their clinical data, including review of digitised pathology and imaging where required.
  • Permission for archival pathology samples or fresh blood and biopsy samples to be collected and used for research.

Only linked anonymised data/biological materials will be stored.


There will be opportunities for recruiting centres to conduct and/or participate in add-on research projects, subject to approval by the steering committee and appropriate regulatory bodies.

The registry is sponsored by the Newcastle upon Tyne Hospitals NHS Foundation Trust.

Your support of Histio UK is vital to ensure that we can maintain the UK Histio Registry which an essential research resource.
Thank you.