Myeloproliferative Neoplasms (MPNs) Patient Registry

University Health Network, Toronto

Status: Enrolling

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

Treatments: Other: Observational

Study type: Observational

Funder types: Other

Identifiers

NCT02760238

UHN REB 15-9814 CE

Details and patient eligibility

About

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.

Full description

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).

Enrollment: 5,000 estimated patients

Sex: All

Volunteers: No Healthy Volunteers

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

Trial design

5,000 participants in 1 patient group

Patients with a diagnosis of MPN

Description:

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

Treatment:

Other: Observational