CMT/Inherited Neuropathies Patient-Reported Survey Needs You to Advance Therapies
HNF has launched a new Patient-Reported Research Study to advance therapies for CMT and inherited neuropathies (IN) in an effort to collect comprehensive data for a better understanding of the disease. The study aims will result in the most comprehensive understanding of the disease and help better characterize and describe the CMT/IN patient population. The study’s eligibility is open to all types of CMT/ IN and, as a whole, will enhance the understanding of the severity of symptoms, characteristic signs (pes cavus, poor or absent reflexes), genotypes, treatments, and patients’ willingness to participate in research and in clinical trial design. This information will assist in the development of recommendations and standards of care guidelines, as well as be useful for identifying clinical endpoints, patient-reported functional outcomes, and best design approaches for clinical trials.
This web-based survey is in an online questionnaire format with multiple choice answers that can be checked off by the participants, with some questions offering the option to fill in an answer when applicable. There is no identifiable personal data, just detailed information that will be collectively analyzed for research purposes and shared within the CMT/IN stakeholder community. HNF will use this survey to continue to build upon the findings that were gathered during the recent 2016 PatientCentered CMT Summit, which was partially funded by the Patient-Centered Outcomes Research Institute (PCORI).
Take the survey at http://www.surveygizmo.com/s3/3320922/CMT-Survey