A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment.
The LGMD2A/Calpainopathy Registry serves to:
- Support the design of clinical trials that explore new calpainopathy treatments;
- Describe the people who have calpainopathy and how calpainopathy may be different for different people;
- Understand how calpainopathy changes over a person’s lifetime;
- Learn how calpainopathy is treated and how people respond to those treatments;
- Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with calpainopathy; and
- Identify people with calpainopathy who might be willing to take part in other research studies or clinical trials. You will be able to choose whether you want to hear about these other studies. If you choose to, you will be contacted by registry staff on behalf of outside researchers to inform you about these studies.