- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT02620254
Mast Cell Connect: A Registry for Patients With Mastocytosis
Study Overview
Status
Conditions
Detailed Description
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.
Study Type
Enrollment (Actual)
Contacts and Locations
Study Locations
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Massachusetts
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Cambridge, Massachusetts, United States
- Registry participation is worldwide and not limited to this facility
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Participation Criteria
Eligibility Criteria
Ages Eligible for Study
- Child
- Adult
- Older Adult
Accepts Healthy Volunteers
Genders Eligible for Study
Sampling Method
Study Population
Description
Inclusion Criteria:
- Any patient with a diagnosis of mastocytosis, including systemic mastocytosis and cutaneous mastocytosis and any subtypes of these diseases, who is willing and able to provide written online informed consent
Exclusion Criteria:
- None
Study Plan
How is the study designed?
Design Details
- Observational Models: Cohort
- Time Perspectives: Prospective
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Time Frame |
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Further the understanding of the epidemiology of mastocytosis and its subtypes
Time Frame: Through completion of the study
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Through completion of the study
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Other Outcome Measures
Outcome Measure |
Time Frame |
---|---|
Improve the collective understanding of the natural history of mastocytosis and its impact on patients
Time Frame: Through completion of the study
|
Through completion of the study
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Assist in the development of mastocytosis therapy by increasing participation in clinical trials and other research studies for patients with mastocytosis
Time Frame: Through completion of the study
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Through completion of the study
|
Collaborators and Investigators
Sponsor
Collaborators
Investigators
- Principal Investigator: Anthony L Boral, MD, PhD, Blueprint Medicines Corporation
Publications and helpful links
Helpful Links
Study record dates
Study Major Dates
Study Start
Primary Completion (Actual)
Study Completion (Actual)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Estimate)
Study Record Updates
Last Update Posted (Actual)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Keywords
- smoldering systemic mastocytosis
- mast cell leukemia
- mastocytosis
- cutaneous mastocytosis
- urticaria pigmentosa
- telangiectasia macularis eruptiva perstans (TMEP)
- diffuse cutaneous mastocytosis
- solitary cutaneous mastocytosis
- systemic mastocytosis
- indolent systemic mastocytosis
- aggressive systemic mastocytosis
- systemic mastocytosis with associated clonal hematologic non-mast cell lineage disease
Additional Relevant MeSH Terms
Other Study ID Numbers
- Mastocytosis Registry
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
Clinical Trials on Mastocytosis
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University Hospital, ToulouseNot yet recruiting
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Blueprint Medicines CorporationActive, not recruitingIndolent Systemic MastocytosisCanada, United States, Spain, United Kingdom, Germany, Belgium, Switzerland, Italy, Netherlands, Denmark, France, Norway, Sweden
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AB ScienceRecruitingIndolent Systemic MastocytosisFrance, Netherlands, Germany, United Kingdom, Russian Federation, Poland, Romania, Ukraine
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University Hospital, ToulouseCompletedIndolent Systemic Mastocytosis | Cutaneous MastocytosisFrance
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University Hospital, ToulouseRecruitingMastocytosis, Indolent SystemicFrance
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Allakos Inc.CompletedIndolent Systemic MastocytosisGermany
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Blueprint Medicines CorporationAnalysis Group, Inc.CompletedMast Cell Leukemia | Aggressive Systemic Mastocytosis | Advanced Systemic Mastocytosis | Systemic Mastocytosis With an Associated Hematological NeoplasmUnited States, Austria, Germany, Spain, United Kingdom
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Cogent Biosciences, Inc.RecruitingMastocytosis | Mastocytosis, Systemic | SSM | Mastocytosis, IndolentUnited States, Italy, Canada, Australia, Spain, Switzerland, Norway, United Kingdom, Belgium, Poland, Netherlands, Germany, France, Czechia, Greece, Ireland
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National Heart, Lung, and Blood Institute (NHLBI)Completed