About the Registry FAQ

What is the Mast Cell Connect patient registry?

Mast Cell Connect is a registry to collect information from people with mastocytosis on their experiences with the disease. By providing researchers with a database of detailed medical information about people with a specific disease, registries have proven to be a valuable tool in better understanding rare diseases like mastocytosis.

What are the goals of Mast Cell Connect?

The ultimate goal of Mast Cell Connect is to speed the development of new treatments for people with mastocytosis. The more we understand about the disease and the more people who participate in research and clinical trials, the closer we can get to finding new treatments.

Specifically, Mast Cell Connect is designed to:

  • Study trends and address specific questions about mastocytosis
  • Gain insights into the impact of mastocytosis on patients over time
  • Speed development of new therapies by increasing participation in clinical trials

Who can join?

People with a diagnosis of mastocytosis, including systemic mastocytosis (SM), cutaneous mastocytosis (CM) and other forms of the disease are invited to join the registry. To join, you must be able to 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.

Why should I join?

By participating in Mast Cell Connect, you can:

  • Access data and insights gleaned from the registry that may be useful in better understanding your own disease
  • Sign up to be notified about clinical trials and other research studies that you may be eligible for based on information you enter into the registry
  • Help advance research and speed development of new treatments

What does participating in the registry involve?

If you join Mast Cell Connect, you will be asked to complete a questionnaire about your experience living with mastocytosis, as well as to share medical records that describe your diagnosis, treatments, symptoms and changes in the disease over time. You may occasionally be asked additional survey questions, and to ensure the registry’s accuracy, you will be asked to update your information a few times a year.

Who has access to the registry?

The broader medical community, including researchers, physicians, patient advocacy groups and companies engaged in mastocytosis research, can request access to the registry. All information in the registry is de-identified, meaning it has been stripped of information that could be used to identify you. As a participant, you have immediate access to the pool of de-identified survey answers.

Will my information be kept confidential?

Yes. When you submit your information to the patient registry, it will be stored and maintained in a secure, password-protected database. Third parties will not be given access to any identifiable patient information, unless you specifically agree to be contacted by them. The registry adheres to all applicable national, state and local personal health data protection standards.

Can I withdraw from the registry if I change my mind?

Yes. Participation in Mast Cell Connect is entirely up to you. You can withdraw from the registry at any point for any reason.