May 6, 2023
The European Neuromuscular Center (ENMC) held its 266th workshop on remote delivery of clinical care and remote clinical outcome assessments for individuals with neuromuscular disorders amid the COVID-19 pandemic.
Cure VCP Disease leaders, Nathan and Allison Peck, had the honor of joining this group of 24 experts from 10 countries across five continents, comprising physical therapists, speech-language pathologists, biostatisticians, patient advocacy representatives, and industry professionals. Cure VCP Disease presented on how patient advocacy can partner to accelerate remote research highlighting our patient registry and natural history studies.
One of the major recommendations from this workshop was that remote testing has potential benefits in both clinical and research settings, especially in providing access to leading experts in the field of neuromuscular clinical care and research.
The acceptance and implementation of video conferencing methods during the pandemic opened additional options for training, reliability testing, and ongoing quality control.
While virtual training options may provide more widespread access, in-person training opportunities were still highly valued and most effective in some circumstances. Virtual or hybrid training options can improve the efficiency of didactic training and may provide the opportunity for ongoing quality control.
However, there are limitations to the use of telemedicine, including restrictions on licensure and access to high-quality internet. Poor health literacy, physical and/or cognitive functioning, and communication abilities can also be barriers to remote testing for clinical purposes. Furthermore, one needs to consider if face-to-face health care and rehabilitation have beneficial aspects that may be missing in a telemedicine approach.
Remote testing for research purposes was deemed useful and worth validating.
Dr. Lindsay Alfano, principal investigator at Nationwide Children’s Hospital, highlighted that the Cure VCP Disease-funded study was one of the ongoing studies that could validate remote testing methods and provide further evidence to support their use in appropriate contexts.
Additional work is needed to fully utilize the potentila of remote testing and training methods; however, the workshop participants agreed that the benefits of improved access to individuals within their home environments make remote testing worthwhile. Offering remote options reduced burden of clinical trial participation, improved access to clinical care, and increased flexibility in scheduling visits and sessions.
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Cure VCP Disease
We are a patient advocacy organization driving efforts to discover a cure for neurodegenerative diseases associated with VCP including IBMPFD, dementia, Parkinson's, CMT, and ALS. We encourage patients and doctors to connect with us. We are committed to collaborating on research and advocacy initiatives and helping patients and their families.