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| Name | Class |
|---|---|
| PatientCrossroads | INDUSTRY |
The Mast Cell Connect Registry is a voluntary, observational database that will capture demographic, socioeconomic, and disease information directly from patients with mastocytosis via a secure web-based tool. No experimental intervention is involved.
Mastocytosis is an extremely rare and heterogeneous spectrum of diseases characterized by the buildup of genetically altered mast cells. Patients experience a wide range of symptoms and in some cases, mast cell buildup can lead to organ dysfunction and failure. Current treatments address disease symptoms and not the underlying cause. To facilitate the development of new therapies for mastocytosis, it is important for the community to support clinical trials and to document the impact of the disease, including disease natural history and the impact on patients, in a systematic way. Mast Cell Connect is a web-based registry that allows mastocytosis patients and caregivers to enter information about the experience of the patient living with mastocytosis directly into an online data collection tool.
The Mast Cell Connect Registry allows mastocytosis patients and caregivers to enter information about the experience of the patient living with mastocytosis directly into a web-based data collection tool. Two forms of data will be collected: responses to surveys administered on the web-based portal, and de-identified data curated from medical reports uploaded by patients or their caregivers.
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| Measure | Description | Time Frame |
|---|---|---|
| Further the understanding of the epidemiology of mastocytosis and its subtypes | Through completion of the study |
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| Measure | Description | Time Frame |
|---|---|---|
| Improve the collective understanding of the natural history of mastocytosis and its impact on patients | Through completion of the study | |
| Assist in the development of mastocytosis therapy by increasing participation in clinical trials and other research studies for patients with mastocytosis |
Inclusion Criteria:
Exclusion Criteria:
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Patients with a diagnosis of mastocytosis, including systemic mastocytosis and cutaneous mastocytosis and any subtypes of these diseases.
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| Name | Affiliation | Role |
|---|---|---|
| Anthony L Boral, MD, PhD | Blueprint Medicines Corporation | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Registry participation is worldwide and not limited to this facility | Cambridge | Massachusetts | United States |
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| Label | URL |
|---|---|
| Related Info | View source |
| Related Info | View source |
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| ID | Term |
|---|---|
| D008415 | Mastocytosis |
| D034701 | Mastocytosis, Cutaneous |
| D014582 | Urticaria Pigmentosa |
| C000715747 | Telangiectasia macularis eruptiva perstans |
| D034721 | Mastocytosis, Systemic |
| D007946 | Leukemia, Mast-Cell |
| ID | Term |
|---|---|
| D009372 | Neoplasms, Connective Tissue |
| D018204 | Neoplasms, Connective and Soft Tissue |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
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| Through completion of the study |
| D000090362 | Mast Cell Activation Disorders |
| D007154 | Immune System Diseases |
| D012878 | Skin Neoplasms |
| D009371 | Neoplasms by Site |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D010859 | Pigmentation Disorders |
| D007938 | Leukemia |
| D015470 | Leukemia, Myeloid, Acute |
| D007951 | Leukemia, Myeloid |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |