Myeloproliferative Neoplasms (MPNs) Patient Registry

  • STATUS
    Recruiting
  • End date
    Oct 8, 2025
  • participants needed
    5000
  • sponsor
    University Health Network, Toronto
Updated on 8 April 2021
anemia
myelofibrosis
myeloproliferative disorder
chronic myelomonocytic leukemia
leukemia
myelomonocytic leukemia
polycythemia vera
ringed sideroblasts
essential thrombocythemia
atypical chronic myeloid leukemia
thrombocytosis
post essential thrombocythemia myelofibrosis
polycythemia

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.

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).

Details
Condition Bone marrow disorder, Chronic myelomonocytic leukemia, Juvenile Myelomonocytic Leukemia, Cancer, Dermatosis, Myelodysplastic-Myeloproliferative Diseases, Philadelphia-Negative Myelogenous Leukemia, Myelosclerosis with myeloid metaplasia, Urticaria Pigmentosa, Mastocytosis, ESSENTIAL THROMBOCYTHEMIA, Polycythemia Vera, Cancer/Tumors, Myelodysplastic/Myeloproliferative Neoplasms, Ewing's Family Tumors, Chronic Eosinophilic Leukemia-not Otherwise Specified, Congenital Skin Diseases, Cancer (Pediatric), Chronic Eosinophilic Leukemia-not Otherwise Specified, Skin Conditions, Myelofibrosis, Neoplasms, Chronic Eosinophilic Leukemia-not Otherwise Specified, myelodysplastic/myeloproliferative neoplasm, myeloproliferative/myelodysplastic disorders, mds/mpd, Chronic Eosinophilic Leukemia-not Otherwise Specified, Chronic Eosinophilic Leukemia-not Otherwise Specified, Chronic Eosinophilic Leukemia-not Otherwise Specified
Treatment Observational
Clinical Study IdentifierNCT02760238
SponsorUniversity Health Network, Toronto
Last Modified on8 April 2021

Eligibility

Yes No Not Sure

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
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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