HistioNode

• Research type

  Research Study

• Full title

  HistioNode: The MRC Rare Disease Platform Node for Histiocytic Disorders

• IRAS ID

  334574

• Contact name

  Tom Ewen

• Contact email

  Tom.Ewen@newcastle.ac.uk

• Sponsor organisation

  Newcastle Hospitals NHS Foundation Trust

• Clinicaltrials.gov Identifier

  NU-014422, Newcastle University Reference

• Duration of Study in the UK

  4 years, 11 months, 30 days

• Research summary

  Histiocytic disorders are rare diseases in which immune cells called macrophages or ‘histiocytes' cause collateral damage to the body. Macrophages develop from white blood cells and normally reside or patrol through the tissues, monitoring the health of cells. They have a potent array of molecular mechanisms to protect and heal. In histiocytosis, macrophages become abnormally activated and cause damage to tissues that can lead to life threatening illness. In histiocytic neoplasms, macrophages gain a mutation in genes governing their behaviour causing them to make spontaneous inflammation. In HLH, (short for haemophagocytic lympho-histiocytosis) macrophages are triggered by defective immunity in other cells to go into overdrive, causing bone marrow failure and widespread organ dysfunction. HLH is caused by a combination of inherited genetic factors and abnormal immune responses to a virus or lymphoma, a type of blood cancer.
  HistioNode brings together doctors, scientists and patient groups within the MRC Rare Disease Platform to tackle the most pressing problems caused by histiocytic disorders. These diseases naturally involve many different organs, and HLH is associated with multiple different triggers. This project will engage with patients and families through our patient involvement partner Histio UK to discuss the priorities of people with a lived experience of histiocytosis. To tackle research question in the laboratory we will collect patient samples and clinical data. This has been challenging especially in HLH where patients become ill very quickly, but this work will enable us to enrol participants and gather material for research. We will also collaborate with the National Disease Registration Services in all four nations to find out more about the medical needs of patients with histiocytosis, including how they are treated in different regions and whether there are unexpected associations with other illnesses.
  

• REC name

  South Central - Hampshire A Research Ethics Committee

• REC reference

  24/SC/0404

• Date of REC Opinion

  3 Jan 2025

• REC opinion

  Favourable Opinion