For Healthcare Providers

Are You Interested in Referring Your Patients to Mast Cell Connect?

Click here to view and print an FAQ about the registry that you can share with your patients about Mast Cell Connect. Or refer your patients to www.mastcellconnect.org for more information about the registry or to join Mast Cell Connect.

Mast Cell Connect: A Registry for Patients with Mastocytosis

Mast Cell Connect is a patient registry to collect information from people with mastocytosis on various aspects of their disease, such as symptoms, treatments, extent of disease, and changes in these parameters over time. The registry is a voluntary, observational database and involves no experimental intervention. The protocol has been approved by the Chesapeake IRB in Columbia, MD. Mast Cell Connect will initially be comprised of information entered directly by patients into a web-based data collection tool together with de-identified information from patient-uploaded medical records. Patient registries have proven a particularly useful tool in other rare diseases to advance research and development of new therapies.

Registry Goals

The goals of Mast Cell Connect are to:

  • Further the understanding of the epidemiology of mastocytosis and its subtypes
  • Improve the understanding of the natural history of the disease and its impact on patients
  • Accelerate development of new therapies by increasing participation in clinical trials and other research studies for patients with mastocytosis

Benefits to Your Patients

By participating in the registry, your patients will be able to:

  • Access the pool of de-identified information and data from the registry
  • Sign up to be notified about clinical trials and other research studies that they may be eligible for based on the information they enter in the registry
  • Contribute to advancing the understanding of mastocytosis and the development of new therapies

Eligibility Criteria

Patients with a diagnosis of mastocytosis, including all subtypes of systemic mastocytosis (SM), mast cell leukemia, cutaneous mastocytosis (CM) and other subtypes of the disease, are eligible for Mast Cell Connect. To join, your patient must provide informed consent. Anyone under 18, or adults who cannot make their own medical decisions or would prefer to have someone else enter their information, may ask a family member, medical caregiver, legal guardian or other designee to register on their behalf.

Are You Interested in Learning More About SM?

COMING SOON: Together with Systemic Mastocytosis is a website designed to inform, empower and engage people with SM, their families and caregivers. The site provides disease information and additional resources for patients and healthcare providers. It also features regular spotlights with perspectives from patients, SM experts and other members of the mastocytosis community.