A new mobile app developed by the Rare Diseases Clinical Research Network (RDCRN) makes it easier than ever for CMT patients to sign up for and navigate the network’s patient registry. The registry will play a key role in identifying patients for clinical trials as the CMTA moves forward with its research program.The Inherited Neuropathies Consortium, which is partially funded by the CMTA, is one of 22 consortia that make up the RDCRN. More than 8,575 people with CMT have signed up for the registry since it began. More information about the INC database, which is critical to complement STAR’s progress and promise for an eventual treatment, can be found at www.cmtausa.org/research/cmt-clinical-trial-registry/.
Signing up for the registry gives the user access to a list of current open studies and contact information for signing up for them. Current open studies include:
- 6601: Natural History Evaluation of Charcot Marie Tooth Disease
- 6602: Genetics of CMT- Modifiers of CMT1A, New Causes of CMT2
- 6603: Development of CMT Peds Scale for Children with CMT
- 6610: Disability Severity Index (DSI) and Hereditary Motor and Sensory Neuropathy Overall Disability Scale (HMSN-R-ODS)
- 6611: Charcot-Marie-Tooth disease Infant Scale
- 6612: Patient Reported Outcomes Measures (PROM) in Carpal Tunnel Therapies in Patients with Inherited Neuropathies
Unlike most apps, the new RDCRN Contact Registry mobile app doesn’t require users to download it from the app store. Users simply bookmark it. Once bookmarked, it shows up on the home screen of the user’s phone, tablet or computer just like a regular app.
The RDCRN Contact Registry app is compatible with all mobile platforms. Clicking on it will take the user directly to the RDCRN Contact Registry login page.
The Contact Registry login page can be accessed at: https://www.rarediseasesregistry.org/