The “LGMD2I Patient Network” is an online portal where patients will be able to track their health and environment information in real-time, as a community. After realizing the willingness of patients to share details on their health and environment through the LGMD2I Facebook group, but also recognizing the limitations of this group regarding its capacity to deal with large sets of data and around privacy protection, we decided to create the “LGMD2I Patient Network” with the mission to transform patient-derived data into actionable information that can be used to improve patient health.
For this, the Samantha J. Brazzo Foundation and the LGMD2I Research Fund have partnered with Curious, Inc., an online platform for personal data tracking, querying and sharing. In order to build a portal that is relevant to LGMD2I patients, Curious is currently interviewing patients and gathering feedback to build an initial pilot study that will launch the Network. Once the pilot study is completed and the patient feedback incorporated, the Network will be open to the entire LGMD2I patient community. For more information on the portal or if you would like to participate in the pilot study, please contact Dr Claudia Mitchell at firstname.lastname@example.org.