Mascot Registry v1

• Research type

  Research Database

• IRAS ID

  261989

• Contact name

  Mallika Sekhar

• Contact email

  mallika.sekhar@nhs.net

• Research summary

  Myeloproliferative neoplasms Associated SplanChnic vein Thrombosis: Mascot Registry

• REC name

  London - Queen Square Research Ethics Committee

• REC reference

  19/LO/0495

• Date of REC Opinion

  21 May 2019

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  During routine healthcare provision, subjects with relevant characteristics (having a diagnosis of MPN-SVT) 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 or from local clinical databases.

  Retrospective and prospective clinical data to be collected from hospital records:
  Diagnostic information:
  NHS number
  Date of birth
  Gender
  Ethnicity
  Date of diagnosis
  Hospital at which diagnosed
  Symptoms, Co-morbidities
  Nature of diagnosis: MPN ; SVT
  Results of diagnostic tests including:
  a) Bone marrow histology, immunophenotyping, cytogenetics, molecular genetics
  b) Liver histology
  c) Cross-sectional imaging
  d) Blood profile of MPN and SVT.

  Treatment information records:
  Indication, start and targets of treatment
  Interventions
  Haematologic, thrombosis responses at 6 months, then annual
  Haemorrhage annual

  Follow up
  Test results, ECOG status, MPN score, Liver score annual
  Survival status, Date of death
  Disease status for MPN

  Data collection will be from hospital records, input by designated clinical staff (typically Registrars in Haematology) on behalf of local hospital PI.

• Research programme

  MPN-SVT is rare and devastating. The condition raises from an acquired mutation of the Jak2 gene in 97% of patients. This leads to a chronic neoplasm of the bone marrow and thrombosis in the abdominal or splanchnic veins. thus patients usually have the neoplasm, thrombosis and gut/liver failure due to the location of the thrombosis. Biologic questions include improved understanding of why the specific predilection of MPN patients to have SVT, what are other drivers for thrombosis, what are other territories of thrombosis and their determinants. Clinical questions include how to improve thrombosis outcomes (30% recurrence in world literature), reduce bleeding, improve treatment of the bone marrow cancer and prevent transformation to leukaemia, how to improve acute interventions to minimise chronic burden, how to improve chronic management. What is the ideal treatment algorithm. How best to use new therapies (jak inhibitor drugs, new anticoagulants, clot disrupting treatments). Service questions: how to improve care pathways. Communities interested in these include molecular biologists, vascular biologists, hepatologists, haematologists, psychologists, transplant surgeons, health economists.

• Research database title

  Myeloproliferative neoplasms Associated SplanChnic vein Thrombosis: Mascot Registry

• Establishment organisation

  University College London Hospital

• Establishment organisation address

  Dept of Haematology, 3rd Floor West

  250 Euston Road

  London

  NW1 2PG