NCT04994158

Brief Summary

A registry of UK patients diagnosed to have splanchnic vein thrombosis and myeloproliferative neoplasm, including isolated mutation of JAK2V617f. The purpose of the registry is to understand outcomes, treatment variations and data to inform and enable future clinical trial design and facilitate regulatory approval decision-making.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
238

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Sep 2019

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

September 1, 2019

Completed
1.9 years until next milestone

First Submitted

Initial submission to the registry

July 29, 2021

Completed
8 days until next milestone

First Posted

Study publicly available on registry

August 6, 2021

Completed
2.1 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 21, 2023

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

September 21, 2023

Completed
Last Updated

July 30, 2025

Status Verified

July 1, 2025

Enrollment Period

4.1 years

First QC Date

July 29, 2021

Last Update Submit

July 25, 2025

Conditions

Myeloproliferative NeoplasmSplanchnic Vein ThrombosisJAK2 V617

Keywords

registry

Outcome Measures

Primary Outcomes (4)

  • transformation of MPN

    transformation to Myelofibrosis or leukaemia

    5 years

  • progression of liver disease

    progression of liver disease

    5 years

  • thrombosis events

    new or recurrent or improvement of thrombosis

    5 years

  • haemorrhage events

    haemorrhage

    5 years

Interventions

Drugs, proceduresCOMBINATION_PRODUCT

standard of care only. non interventional registry.

Also known as: cytoreductive drugs, anticoagulation drugs

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Patients with MPN of any category and splanchnic vein thrombosis

You may qualify if:

  • Age\>18 years
  • Myeloproliferative neoplasm (MPN, WHO 2008, WHO 2016, BCSH) and splanchnic vein thrombosis
  • Isolated Jak2v617f allele and splanchnic vein thrombosis
  • MPN and portal cavernoma

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Royal Free London Hospital

London, NW3 2QG, United Kingdom

Location

MeSH Terms

Conditions

Myeloproliferative Disorders

Interventions

Pharmaceutical Preparations

Condition Hierarchy (Ancestors)

Bone Marrow DiseasesHematologic DiseasesHemic and Lymphatic Diseases

Study Design

Study Type
observational
Observational Model
CASE ONLY
Time Perspective
OTHER
Target Duration
2 Years
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Consultant Haematologist

Study Record Dates

First Submitted

July 29, 2021

First Posted

August 6, 2021

Study Start

September 1, 2019

Primary Completion

September 21, 2023

Study Completion

September 21, 2023

Last Updated

July 30, 2025

Record last verified: 2025-07

Data Sharing

IPD Sharing
Will not share

Data of identifiable nature will not be shared. Post analysis data will be published.

Locations

GB(1)