The Mast Cell Diseases Patient and Provider Registry (MCD Registry) collects disease-specific natural history data about individuals with mast cell disease(s), with the goal of improving the understanding of mast cell diseases and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Symptoms and triggers
- Nutrition and diet
- Management of care
- Mental, emotional, and social health
- Emergency room experiences
- Quality of life and daily living experiences
- Caregiver experiences
- Genetics
- Clinical trial participation
- And much more!
We are interested in sharing our data with you! If you would like access to the MCD Registry data for a research project, please contact our registry administrator, Dr. Shonna Snyder, at registry@tmsforacure.org for more information. Access to MCD Registry data is contingent upon project approval by the MCD Registry Governing Board.