WMUK Registry

• Research type

  Research Database

• IRAS ID

  222521

• Contact name

  Shirley D'Sa

• Contact email

  shirley.dsa@uclh.nhs.uk

• Research summary

  WMUK Rory Morrison Registry

• REC name

  London - South East Research Ethics Committee

• REC reference

  17/LO/1666

• Date of REC Opinion

  20 Nov 2017

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  During routine healthcare provision, subjects with relevant characteristics (having a diagnosis of Waldenstroms macroglobulinaemia (WM) or associated condition) will be approached. A verbal explanation of the existence and purpose of the Registry will be carried out. The identification of subjects will occur in the clinical setting- outpatient and inpatient by clinical staff.

  A) Information at time of initial entry to Registry will include:
  NHS number
  Date of birth
  Gender
  Date of diagnosis
  Hospital at which diagnosed
  Symptoms
  Co-morbidities
  ECOG performance status
  Details of diagnosis: WM (a/symptomatic), amyloidosis, autoimmune haemolytic anaemia (AIHA), cold agglutinin disease (CAD), cryoglobulinaemia, transformation to high grade lymphoma, neuropathy etc.
  Results of diagnostic tests (where available) including bone marrow, imaging and blood profile

  B) Treatment information records:
  Indication for treatment (lymphoma-related/IgM related)
  Date of commencement
  Regimen(s) used, number of cycles
  Involvement in clinical trials
  Duration of response

  C) Clinical follow up by live with entries for:
  Test results
  ECOG status
  B or other symptoms
  Clinical examination
  Infections history

  D) Patient status at follow up
  At each visit to continue for the duration of study (15 years) or date of death.
  Survival status and disease status according to IWWM consensus criteria

• Research programme

  WM is a rare blood cancer caused by genetic changes in the cells of the immune system called B cells, affecting 400+ patients per year in the UK. It disproportionately affects older people and men. It is sometimes described as lymphoplasmacytic lymphoma or LPL- a lymphoproliferative disease that is treatable, but not yet curable. Many features of this slow-moving disease which set it apart from other lymphomas result from production of IgM (Immunoglobulin M) paraprotein and accumulation of lymphoplasmacytic cells in the bone marrow, usually picked up in an extended blood test. In WM, the defective cells produce large quantities of non-useful IgM called Paraprotein. These are very large molecules and can thicken the blood, reducing its flow through capillaries so-called hyperviscosity. Other complications include deposition of a sticky protein called amyloid that can cause organ damage, immune problems causing anaemia and conditions due to invasion or inflammation of the nervous system either peripheral (neuropathy) and central (Bing-Neel syndrome). The optimum way to treat this disease is under investigation, as new therapies become available, but a clear picture of the disease in the UK is lacking. A robust database of patients is badly needed to improve clinical outcomes.

• Research database title

  WMUK Rory Morrison Registry

• Establishment organisation

  UCLH

• Establishment organisation address

  Cancer Division

  3rd Floor West

  250 Euston Road, London

  NW1 2PG