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.
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).
Study Type
OBSERVATIONAL
Enrollment
5,000
Princess Margaret Cancer Centre
Toronto, Ontario, Canada
RECRUITINGSurvival
Survival of patients with MPN
Time frame: Annually or at the time of transformation of disease, up to 10 years
General patient characteristics will be captured from the Hematologic Malignancy tissue bank
Type and phase of MPN, previous cancer history, age, sex
Time frame: Annually or at the time of transformation of disease, up to 10 years
Disease risk score
Risk stratification (IPSS, DIPSS and DIPSS) o Details of transformation to accelerated/phase phase disease
Time frame: Annually or at the time of transformation of disease, up to 10 years
Quality of life - Neoplasm Symptom
MPN-SAF TSS questionnaire
Time frame: Annually or at the time of transformation of disease, up to 10 years
Co-morbidities
HCT-CI
Time frame: Annually or at the time of transformation of disease, up to 10 years
Physical symptoms of MPN
Physical examination: Splenomegaly and hepatomegaly, ascites, EMS, ECOG
Time frame: Annually or at the time of transformation of disease, up to 10 years
MPN treatment type received
Medical therapies received
Time frame: Annually or at the time of transformation of disease, up to 10 years
Transfusion dependence status
Transfusion status
Time frame: Annually or at the time of transformation of disease, up to 10 years
Current Blood Work
CBC, INR, PT, APTT, fibrinogen, creatinine, ALP, ALT, AST, GGT, total bilirubin, LDH, urate, CRP, erythropoietin, hepatitis B and HIV
Time frame: Annually or at the time of transformation of disease, up to 10 years
Identifying MPN driver mutations by using next generation sequencing.
Next generation sequencing gene panel
Time frame: Annually or at the time of transformation of disease, up to 10 years
Bone marrow transplant details (if received)
Details of recipient (CMV status, ABO blood group) * Details of donor (gender, CMV status, ABO blood group) * Disease status at time of transplant (blood work disease status) * Transplant details (stem cell source, HLA matching, conditioning intensity \& regimen, serotherapy, GVHD prophylaxis)
Time frame: Annually or at the time of transformation of disease, up to 10 years
Bone marrow transplant complications (if received)
Toxicities, engraftment and chimerism, GVHD, significant infections in the first 100 days
Time frame: Annually or at the time of transformation of disease, up to 10 years
Portal hypertension
Presence and details of ascites, GIT bleeding, esophageal \& gastric varices, cirrhosis and portal hypertensive gastropathy o Endoscopy results
Time frame: Annually or at the time of transformation of disease, up to 10 years
Pulmonary hypertension
WHO classification, echocardiogram results, CNP, troponin, pulmonary function tests, 6 minute walk test distance, blood gas, treatment, complications
Time frame: Annually or at the time of transformation of disease, up to 10 years
Thrombosis
Details of thrombosis (type, site) o Treatment of thrombosis (type, duration)
Time frame: Annually or at the time of transformation of disease, up to 10 years
Family history of MPN will be obtained from the patient record.
Relative affected (e.g. daughter, uncle, mother), details of MPN (type, phase, treatment received)
Time frame: Annually or at the time of transformation of disease, up to 10 years
Disease progression
Risk stratification (IPSS, DIPSS and DIPSS)
Time frame: Annually or at the time of transformation of disease, up to 10 years
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