The goal of Patients as Partners in Research is to advance the work of our Strategy to Accelerate Research (STAR) and enroll the patient community in the critical work of furthering the development of treatments, and ultimately a cure, for CMT.
The CMTA is seeking patient volunteers for a new study on pulmonary function in CMT2A patients!
The CMTA is excited to announce it is launching the Patients as Partners in Research initiative in 2018. Patients as Partners in Research will be a critical initiative to advance the work the CMTA is doing through our Strategy to Accelerate Research (STAR) and it will showcase ways every patient can participate in critical work that will lead to developing treatments and ultimately a cure for CMT.
The CMTA is funding a new study with the University of Iowa CMT Clinic and CMTA Center of Excellence to look at pulmonary function for people who have CMT type 2A (CMT2A).
You are eligible for this project if you are 15 and older and have a diagnosis of CMT2A.
If you decide to participate in this study, the University of Iowa (UI) will evaluate your symptoms and you will have pulmonary function tests to assess any problems with your breathing.
This may then lead to a night time breathing treatment similar to CPAP for sleep apnea which could be tried to see if it would help with your breathing. The UI will follow up over time, so after the first visit they will see people back at 3 months, 6 months, and 12 months to see if this works in people with CMT2A.
If you are interested in learning more about participating in this study, please contact Nicole Kressin with the University of Iowa CMT clinic at firstname.lastname@example.org.