Идёт набор NCT06186856

Epidemiological Data on Mast Cell Pathologies in France

— Наблюдательное Mast Cell Disorder

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: Это наблюдательное исследование: исследуемое лечение участникам по протоколу не назначают.
Кому может быть актуально: Состояния в реестре: Mast Cell Disorder. 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: Франция
Следующий шаг: Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →

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Обзор

Mast cell disorders constitute a heterogeneous group of diseases, including : * mastocytosis, i.e. cutaneous, indolent and severe forms of the disease, such as aggressive mastocytosis and mast cell leukemia) ; * mast cell-associated diseases such as mast cell activation syndrome (idiopathic, secondary or clonal), affecting both children and adults. No epidemiological data are currently available in France. In France, medical care of mast cell disorders is mainly provided by a rare disease network (CEREMAST), whose CRMR is located at the Necker Enfants Malades hospital in Paris. A total of 20 centers are located throughout France. Our aim is to use this network to study patients suffering from these diseases. The overall aim of the study is to improve the understanding, diagnosis, prognosis, recognition and management of patients with mastocytosis.

Первичные конечные точки

Epidemiology of mast cell disorders in France assessed by statistics on the prevalence on the various types of mast cell disorders [Срок оценки: Data 2010 - 2038]
Epidemiology of mast cell disorders in France assessed by statistics on the incidence on the various types of mast cell disorders [Срок оценки: Data 2010 - 2038]

Вторичные конечные точки (12)

Patient characteristics [Срок оценки: Data 2010 - 2038]
Characteristics of mast cell disease assessed by type of disease [Срок оценки: Data 2010 - 2038]
Characteristics of mast cell disease assessed by diagnostic criteria [Срок оценки: Data 2010 - 2038]
Characteristics of mast cell disease assessed by symptoms of disease [Срок оценки: Data 2010 - 2038]
Evolution of mast cell disease assessed by progression of skin lesions [Срок оценки: Data 2010 - 2038]
Evolution of mast cell disease assessed by progression to aggressive form [Срок оценки: Data 2010 - 2038]
Evolution of mast cell disease assessed by associated hemopathy [Срок оценки: Data 2010 - 2038]
Evolution of mast cell disease assessed by appearance of new symptoms [Срок оценки: Data 2010 - 2038]
Patient follow-up assessed by occurrence of other medical events in the patient [Срок оценки: Data 2010 - 2038]
Patient follow-up assessed by overall survival [Срок оценки: Data 2010 - 2038]
Types of treatment used on mastocytosis and any associated hemopathy [Срок оценки: Data 2010 - 2038]
Tolerance of treatment used on mastocytosis and any associated hemopathy [Срок оценки: Data 2010 - 2038]

Критерии участия

Критерии включения

Children from birth and adults of any age
With one of the following mast cell diseases:

Mastocytoses (cutaneous, systemic and sarcomas) Defined according to the WHO 2016 classification
Mast cell activation syndromes (idiopathic, secondary and clonal)
Other mast cell activation disorders (MCAD-NOS), Defined according to the Vienna classification
Pre-mastocytosis or MMC (1 to 2 criteria according to WHO 2016 classification).
Managed in France in a rare disease reference, constitutive or competence center (CEREMAST) with DGOS labelization.