Myeloproliferative Neoplasms (MPNs) Patient Registry

NCT02760238 | Recruiting

• 1 other identifier: UHN REB 15-9814 CE
• Study Type: observational
• Target: 5,000
• Locations: 1 country
• Sites: 1

Brief Summary

The mandate of this MPN registry is to collect clinical information, including molecular results, from consenting patients with a variety of MPNs at different time points during the course of their disease.

Conditions

Primary Myelofibrosis; Polycythemia Vera; Essential Thrombocythemia; Mastocytosis; Leukemia, Myeloid, Chronic, Atypical, BCR-ABL Negative; Leukemia, Myelomonocytic, Juvenile; Chronic Eosinophilic Leukemia-not Otherwise Specified; Myelodysplastic-Myeloproliferative Diseases; Neoplasms; Leukemia, Myelomonocytic, Chronic

Keywords

myeloproliferative neoplasm; myelodysplastic syndrome; registry; leukemia; Bone Marrow Diseases; Hematologic Diseases; Neoplasms

Outcome Measures

Primary Outcomes (1)

• Survival

  Survival of patients with MPN

  Annually or at the time of transformation of disease, up to 10 years

Secondary Outcomes (16)

• General patient characteristics will be captured from the Hematologic Malignancy tissue bank

  Annually or at the time of transformation of disease, up to 10 years

• Disease risk score

  Annually or at the time of transformation of disease, up to 10 years

• Quality of life - Neoplasm Symptom

  Annually or at the time of transformation of disease, up to 10 years

• Co-morbidities

  Annually or at the time of transformation of disease, up to 10 years

• Physical symptoms of MPN

  Annually or at the time of transformation of disease, up to 10 years

Study Arms (1)

Patients with a diagnosis of MPN

Patients with a myeloproliferative neoplasm (MPN) diagnosis: Atypical chronic myeloid leukemia (aCML), chronic eosinophilic leukemia-not otherwise specified (CEL NOS), chronic myelomonocytic leukemia (CMML), chronic neutrophilic leukemia (CNL), polycythemia vera (PV), essential thrombocythemia (ET), JMML, mastocytosis, MPN unclassifiable, myeloproliferative neoplasm/myelodysplastic syndrome unclassifiable (MPN/MDS unclassifiable), primary myelofibrosis (PMF), post-ET MF, post-PV MF, or (refractory anemia with ringed sideroblasts associated with marked thrombocytosis) RARS-T

Other: Observational

Interventions

Observational OTHER

Patients with a diagnosis of MPN

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients at Princess Margaret Cancer Centre with an MPN diagnosis who consent to inclusion in this registry.

You may qualify if:

• Diagnosis of one of the following myeloproliferative neoplasms (MPNs):
• Atypical CML (aCML)
• Chronic eosinophilic leukemia-not otherwise specified (CEL, NOS),
• Chronic myelomonocytic leukemia (CMML)
• Chronic neutrophilic leukemia (CNL),
• Essential thrombocythemia (ET),
• Juvenile myelomonocytic leukemia (JMML),
• Mastocytosis, MPN unclassifiable
• MPN/MDS unclassifiable,
• Primary myelofibrosis (PMF),
• Post-essential thrombocythemia myelofibrosis (post-ET MF),
• Post-polycythemia vera MF (post-PV MF)
• Refractory anemia with ringed sideroblasts associated with marked thrombocytosis (RARS-T)

You may not qualify if:

• None

Sponsors & Collaborators

• University Health Network, Toronto: lead

Study Sites (1)

Princess Margaret Cancer Centre

Toronto, Ontario, M5G 1Z5, Canada

RECRUITING

Related Publications (1)

• Medeiros JJF, Zeng AGX, Bansal S, Kim H, Chan-Seng-Yue M, Woo T, McLeod JL, Kothari S, Arruda A, Tsui H, Claudio JO, Maze D, Sibai H, Minden MD, Kennedy JA, Famulare CA, Rampal RK, Wang JCY, Dick JE, Gupta V. A Stem and Progenitor Cell-Derived Gene Expression Signature is Prognostic for Survival in Myelofibrosis. Blood. 2026 Jan 2:blood.2025030094. doi: 10.1182/blood.2025030094. Online ahead of print.

  PMID: 41481381 DERIVED

MeSH Terms

Conditions

Primary Myelofibrosis; Polycythemia Vera; Thrombocythemia, Essential; Mastocytosis; Leukemia, Myeloid, Chronic, Atypical, BCR-ABL Negative; Leukemia, Myelomonocytic, Juvenile; Hypereosinophilic Syndrome; Myelodysplastic-Myeloproliferative Diseases; Neoplasms; Leukemia, Myelomonocytic, Chronic; Myeloproliferative Disorders; Myelodysplastic Syndromes; Leukemia; Bone Marrow Diseases; Hematologic Diseases

Interventions

Watchful Waiting

Condition Hierarchy (Ancestors)

Hemic and Lymphatic Diseases; Bone Marrow Neoplasms; Hematologic Neoplasms; Neoplasms by Site; Blood Coagulation Disorders; Thrombocytosis; Blood Platelet Disorders; Hemorrhagic Disorders; Neoplasms, Connective Tissue; Neoplasms, Connective and Soft Tissue; Neoplasms by Histologic Type; Mast Cell Activation Disorders; Immune System Diseases; Leukemia, Myeloid; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Eosinophilia; Leukocyte Disorders

Intervention Hierarchy (Ancestors)

Outcome Assessment, Health Care; Outcome and Process Assessment, Health Care; Quality of Health Care; Health Services Administration

Study Officials

• Vikas Gupta, MD

  University Health Network, Toronto

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Vikas Gupta, MD

CONTACT

416-946-4521; vikas.gupta@uhn.ca

Jaime O. Claudio, PhD

CONTACT

416-946-4501; jclaudio@uhnresearch.ca

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: OTHER
• Target Duration: 10 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: March 24, 2016
• First Posted: May 3, 2016
• Study Start: April 1, 2015
• Primary Completion (Estimated): October 31, 2027
• Study Completion (Estimated): October 31, 2027
• Last Updated: August 27, 2024

Record last verified: 2024-08

Data Sharing

• IPD Sharing: Will share
• Time Frame: Continuing
• Access Criteria: De-identified participant data may only be shared for REB approved research studies.

Locations

CA (1)