A newly launched international observational study is going to explore the overall impact of Charcot-Marie-Tooth disease (CMT) using a tailored app called CMT&Me.
Designed by Vitaccess in collaboration with Pharnext, this new trial is expected to provide information on the disease’s medical, social, and economic impact, as well as its effect on patients’ daily lives and CMT progression.
The CMT&Me digital app was developed based on Vitaccess’ MyRealWorld platform. It takes advantage of the “Bring Your Own Device” technology, which makes the app accessible through participants’ smartphones while it collects real-world, real-time data.
The optimization of the app for the CMT community and all the educational material were developed in collaboration with international CMT experts, patients, and international patient advocacy organizations, including the HNF (Hereditary Neuropathy Foundation) and CMTA (Charcot Marie Tooth Association) in the United States, Federación ASEM (Federación Española de Enfermedades Neuromusculares) in Spain, ACMT-Rete in Italy, CMT UK, CMT France, and the CMT European Federation.
Through the app, patients will have access to educational material containing medical and practical information about CMT. They will also be able to track their disease manifestations over time, and share information with friends, family, and healthcare teams.
The participants will also have the opportunity to respond to background and quality of life surveys that will provide information on what it is like to live with this rare disease.
The collected data will be sent to a central database, where it will be compiled and used to further improve knowledge of CMT and potentially help develop strategies to enhance patient care.
Non-commercial researchers and patient advocacy organizations can then apply to the Scientific Advisory Board to have free access to a research portal, where they will find dashboards combining visual data representation and appropriate statistical analysis of it.
All data will be manipulated and analyzed following strict policy rules to maintain participants’ anonymity.
To participate in the study, one only needs to install the app on a smartphone (either Android or iOS systems) and answer a few questions to confirm eligibility. The app is available in English, German, French, Italian, and Spanish, and will be launched in the U.S., U.K., Germany, France, Italy, and Spain.