New Patient List
Let’s get counting! Our goal is to connect families with each other and to fuel research. To get started, we need to know how many of us there are. Do you want to connect with other families and be counted?
Having a critical mass of potential patients is key to attracting research interest. We are not starting a formal patient registry at this time, but we have started a patient list. Joining the patient list is one of the most important steps a family can take to support future research into the MAST family of genes.
How is my Information Stored?
We are using a database that is focused on data capture for research, which the ability to be HIPAA compliant as well. This database is called REDCap.
REDCap is a secure web application for building and managing online surveys and databases. While REDCap can be used to collect virtually any type of data in any environment (including compliance with 21 CFR Part 11, FISMA, HIPAA, and GDPR), it is specifically geared to support online and offline data capture for research studies and operations. The REDCap Consortium, a vast support network of collaborators, is composed of thousands of active institutional partners in over one hundred countries who utilize and support their own individual REDCap systems. Learn more about REDCap.
