Mast Cell Connect: A Registry for Patients With Mastocytosis
Mast Cell Connect: A Registry for Patients With Mastocytosis
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.
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