For Clinicians

With funding from Histio UK and CRUK, the registry aims to recruit patients with histiocytic disorders, to establish a research tissue bank for academic and clinical research, as well as clinical trials.

Registered users can submit the clinical data directly using the secured online portal:  

UKHR REDCap Portal 

For access to the portal, please contact the Chief Investigator, Professor Matt Collin, matthew.collin@newcastle.ac.uk.  

About the UKHR

The aims of UKHR are as follows:

  • 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.

What is involved?

Patient recruitment opened 1 May 2019. If you are interested in joining or would like further information, please contact the Chief Investigator, Professor Matt Collin, matthew.collin@newcastle.ac.uk.  

All recruitment centres will need to:

  • Register the study with their local R&D department (no separate R&D approval or site-specific assessment is required however).
  • Obtain Caldicott approval.
  • Arrange a pre-study visit with the Chief Investigator.

Your help in achieving our target is vital - enrolment of just one patient from your centre can make a difference.