An observational study in Mastocytosis, sponsored by Blueprint Medicines Corporation. Completed at 1 site in United States. Per ClinicalTrials.gov, last updated 2021-02-04.
Sponsored by Blueprint Medicines Corporation · Observational
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.
75 studies on the registry are indexed under Mastocytosis; 16 are open to participants now.
This study's enrollment of 743 is above the median of 200 across 31 observational studies indexed under Mastocytosis.
Browse Mastocytosis studies →Blueprint Medicines Corporation is the lead sponsor of 32 studies on the registry; 6 are open to participants now.
Of its 14 completed or terminated interventional studies of FDA-regulated products, 3 (21%) have results posted.
Counted across the registry records on this site, refreshed daily.
Patients with a diagnosis of mastocytosis, including systemic mastocytosis and cutaneous mastocytosis and any subtypes of these diseases.
Exclusion Criteria:
Further the understanding of the epidemiology of mastocytosis and its subtypes
Time frame: Through completion of the study
Improve the collective understanding of the natural history of mastocytosis and its impact on patients
Time frame: 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
Time frame: Through completion of the study
This study is completed, as verified in Feb 2021. You cannot join it, but the record below documents what was studied.
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Blueprint Medicines Corporation