A group of researchers is inviting adult Charcot-Marie-Tooth disease (CMT) patients who have mobility or dexterity limitations and/or their caregivers to take an online survey regarding their experiences using medicines.
The experiences that people living with CMT have had with medications may help researchers better understand treatment safety in CMT and improve therapies for the disorder.
With no medications specifically approved for CMT, treatment frequently includes a variety of medicines to manage pain from muscle cramps and nerve damage. The impact of many of these medications on people with CMT, however, remains unclear, and some may even have the potential to damage nerves.
The team, led by Alison Shield, PhD, a professor of pharmacy at the University of Canberra, aims to understand whether certain medications have a greater impact on people with CMT, compared with the general population, by documenting the effects — both positive and negative — that various medicines have had on their symptoms.
The researchers have conducted research into CMT medication safety in the past, using focus groups and one-on-one interviews. Results uncovered several treatment-related adverse effects and difficulties patients face in obtaining safety information about medicines they were taking. The online survey may expand upon those findings.
Anyone participating in the project will be asked to complete a 15–20 minute survey. Participants will be asked about their medications, doses taken, and treatment duration, among other questions.
Participation is voluntary and individuals may withdraw at any time. If a participant wishes to withdraw their responses after submitting them, they will need to provide an identification key.
All information used in the project is kept confidential, and any data collected will not be linked directly to individual participants. Only the researchers conducting the study will have access to participant data. Collective results may be presented at conferences or published in academic papers, and used for future research, but the confidentiality of all volunteers will be maintained throughout.
The investigators will store the collected information on a password-protected computer during the project, after which it will be kept at the University of Canberra for five years and then destroyed according to university protocols.
Queries and concerns can be directed to Shield at [email protected]
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