The LGMD2A/Calpainopathy Registry collects disease-specific natural history data about individuals with Calpainopathy, with the goal of improving the understanding of Calpainopathy 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
- Management of care
- Quality of life
- Clinical trial participation
We are interested in collaborating with you. If you would like access to the LGMD2A/Calpainopathy Registry findings for a research project, please contact our registry administrator at Registry@CureCalpain3.org for more information. Access to the LGMD2A/Calpainopathy Registry data is contingent upon project approval by the LGMD2A/Calpainopathy Registry Advisory Board.