Myeloproliferative Neoplasms (MPNs) Patient Registry

NCT ID: NCT02760238

Last Updated: 2024-08-27

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

5000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2015-04-30

Study Completion Date

2027-10-31

Brief Summary

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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.

Detailed Description

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The myeloproliferative neoplasms (MPNs) are a group of rare hematological malignancies in which the bone marrow cells that produce the body's blood cells develop and function abnormally.

Despite the gains that have already been made in understanding and treatment of MPNs there is much that can still be learned. This registry will establish a clinical annotation database would help to better understand this group of diseases and to more effectively assign individual patients to the optimal therapy and so, improve their outcomes. This project will provide new insights on the molecular profiling of patients with MPN. It will be used as future resource for observational studies related to MPN.

The registry involves the collection of clinical information from patients with diagnosis of MPN at different time points during the course of their disease. The clinical data is collected following written informed consent from the Hematologic Malignancy tissue bank (UHN REB 01-0573C).

Data collected includes: a range of clinical measures, disease-associated factors, details of treatment and its results, complications during treatment, molecular and cytogenetic data, symptom assessment and survival outcome (up to 10 years).

Data will be collected prospectively and retrospectively, in both cases after obtaining written informed consent as per the study standard operating procedure (SOP).

Conditions

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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

Study Design

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Observational Model Type

COHORT

Study Time Perspective

OTHER

Study Groups

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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

Observational

Intervention Type OTHER

Interventions

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Observational

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

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)

Exclusion Criteria

* None
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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University Health Network, Toronto

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Vikas Gupta, MD

Role: PRINCIPAL_INVESTIGATOR

University Health Network, Toronto

Locations

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Princess Margaret Cancer Centre

Toronto, Ontario, Canada

Site Status RECRUITING

Countries

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Canada

Central Contacts

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Vikas Gupta, MD

Role: CONTACT

416-946-4521 ext. 4521

Jaime O. Claudio, PhD

Role: CONTACT

416-946-4501 ext. 2648

Facility Contacts

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Vikas Gupta, MD

Role: primary

416-946-2885

Other Identifiers

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UHN REB 15-9814 CE

Identifier Type: -

Identifier Source: org_study_id

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