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Mast cell disorders constitute a heterogeneous group of diseases, including :
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients |
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| Measure | Description | Time Frame |
|---|---|---|
| Epidemiology of mast cell disorders in France assessed by statistics on the prevalence on the various types of mast cell disorders | Data 2010 - 2038 | |
| Epidemiology of mast cell disorders in France assessed by statistics on the incidence on the various types of mast cell disorders | Data 2010 - 2038 |
| Measure | Description | Time Frame |
|---|---|---|
| Patient characteristics | age, gender, personal and family medical history | Data 2010 - 2038 |
| Characteristics of mast cell disease assessed by type of disease | Data 2010 - 2038 |
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Inclusion Criteria:
Children from birth and adults of any age
With one of the following mast cell diseases:
Managed in France in a rare disease reference, constitutive or competence center (CEREMAST) with DGOS labelization.
Exclusion Criteria:
1. Opposition of the patient or his/her parents to participation in the study.
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Patient with mast cell diseases, managed in France in a rare disease reference center CEREMAST.
13000 pateints estimated.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Julien Rossignol, Dr | Contact | +33 (0)1 44 49 40 00 | julien.rossignol@aphp.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU AMIENS site sud | Recruiting | Amiens | France |
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| ID | Term |
|---|---|
| D008415 | Mastocytosis |
| D000090362 | Mast Cell Activation Disorders |
| ID | Term |
|---|---|
| D009372 | Neoplasms, Connective Tissue |
| D018204 | Neoplasms, Connective and Soft Tissue |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
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| Characteristics of mast cell disease assessed by diagnostic criteria | Data 2010 - 2038 |
| Characteristics of mast cell disease assessed by symptoms of disease | Data 2010 - 2038 |
| Evolution of mast cell disease assessed by progression of skin lesions | Data 2010 - 2038 |
| Evolution of mast cell disease assessed by progression to aggressive form | Data 2010 - 2038 |
| Evolution of mast cell disease assessed by associated hemopathy | Data 2010 - 2038 |
| Evolution of mast cell disease assessed by appearance of new symptoms | Data 2010 - 2038 |
| Patient follow-up assessed by occurrence of other medical events in the patient | Data 2010 - 2038 |
| Patient follow-up assessed by overall survival | Data 2010 - 2038 |
| Types of treatment used on mastocytosis and any associated hemopathy | Data 2010 - 2038 |
| Tolerance of treatment used on mastocytosis and any associated hemopathy | Data 2010 - 2038 |
| Efficacy of treatment used on mastocytosis and any associated hemopathy | Data 2010 - 2038 |
| Chu Angers | Recruiting | Angers | 49100 | France |
|
| Chu - Besancon | Recruiting | Besançon | 25000 | France |
|
| Chu - Caen | Recruiting | Caen | 14033 | France |
|
| Chu - Clermont Ferrand | Recruiting | Clermont-Ferrand | France |
|
| CHU Grenoble | Recruiting | Grenoble | 38700 | France |
|
| Chru Lille | Recruiting | Lille | 59037 | France |
|
| Chu - Limoges | Recruiting | Limoges | 87000 | France |
|
| Hospices Civils de Lyon | Recruiting | Lyon | France |
|
| Chu - La Timone - Marseille | Recruiting | Marseille | 13005 | France |
|
| CHU de Montpellier | Recruiting | Montpellier | 34090 | France |
|
| CHU de NANCY | Recruiting | Nancy | 54035 | France |
|
| Chu - Nantes | Recruiting | Nantes | 44000 | France |
|
| Hôpital Universitaire Pitié Salpetrière | Recruiting | Paris | 75013 | France |
|
| Hôpital Necker-Enfants malades | Recruiting | Paris | 75015 | France |
|
| CHU - Poitiers | Recruiting | Poitiers | France |
|
| Chu - Rennes | Recruiting | Rennes | 35000 | France |
|
| CHU Réunion sud - Saint Pierre | Recruiting | Saint-Pierre | 97448 | France |
|
| Chru - Strasbourg | Recruiting | Strasbourg | 67200 | France |
|
| CHU Purpan | Recruiting | Toulouse | 40031 | France |
|
| CHU de TOURS | Recruiting | Tours | 37000 | France |
|
| D007154 | Immune System Diseases |