Идёт набор NCT02760238

Myeloproliferative Neoplasms (MPNs) Patient Registry

— Наблюдательное Primary Myelofibrosis Polycythemia Vera Essential Thrombocythemia Mastocytosis

Ориентир для пациента и семьи

Простыми словами

Автоматическая сводка по структурированным данным реестра. Она помогает сориентироваться, но не заменяет официальный протокол или оценку врача.

Что изучают: В протоколе указаны: Observational.
Кому может быть актуально: Состояния в реестре: Primary Myelofibrosis, Polycythemia Vera, Essential Thrombocythemia, Mastocytosis. Базовые параметры: Без ограничений · Все.
Что важно проверить: Возраст, диагноз и пол — только базовые ориентиры. Предыдущее лечение, анализы и другие обязательные условия указаны ниже в критериях участия.
Где проводится: Канада
Следующий шаг: Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →

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Официальное название

Clinical and Molecular Epidemiology of Myeloproliferative Neoplasms (MPNs)

Обзор

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.

Подробное описание

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).

Вмешательства

Другое Observational

Первичные конечные точки

Survival [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]

Вторичные конечные точки (12)

General patient characteristics will be captured from the Hematologic Malignancy tissue bank [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Disease risk score [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Quality of life - Neoplasm Symptom [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Co-morbidities [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Physical symptoms of MPN [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
MPN treatment type received [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Transfusion dependence status [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Current Blood Work [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Identifying MPN driver mutations by using next generation sequencing. [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Bone marrow transplant details (if received) [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Bone marrow transplant complications (if received) [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]
Portal hypertension [Срок оценки: Annually or at the time of transformation of disease, up to 10 years]

Критерии участия

Критерии включения

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)