Mast Cell Connect: A Registry for Patients With Mastocytosis
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | Any |
| Updated: | 1/18/2019 |
| Start Date: | November 2015 |
| End Date: | December 2020 |
| Contact: | Blueprint Medicines |
| Email: | mastcellregistry@blueprintmedicines.com |
| Phone: | 617-714-6678 |
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.
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.
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.
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:
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