The Amyotrophic Lateral Sclerosis and Related Disorders (ALSRD) Clinic officially opened this week at the Djavad Mowafaghian Centre for Brain Health (DMCBH). The clinic will provide consultation, ongoing assessment, intervention, and educational services to people with ALS and related motor neuron diseases (MNDs).
The ALSRD Clinic is staffed by four neuromuscular neurologists, as well as a highly trained ALS team, including a registered nurse, physical and occupational therapists, a speech and language pathologist, a dietitian and social workers. Future plans include expanding the team to include a clinical/research nurse who will help to bridge clinical research with patient care.
Previously located at the GF Strong Rehabilitation Centre, the ALSRD Clinic now joins six other clinics housed at the DMCBH, all of which provide patient care for people living with various neurodegenerative disorders. The clinic will continue to provide comprehensive care for patients, both in-person and via virtual telemedicine appointments for those who are homebound or live too far away to travel. In addition, an innovative partnership with the ALS Society of BC (ALSBC) provides an outreach mobile clinic program to visit patients in remote areas of the province.
The clinic is part of the overarching ALSRD Program, whose mission is to expand its clinical trials, translational and basic research into identifying novel diagnostics and targets for effective therapies in these disorders. Dr. Erik Pioro, recently appointed to the Professorship in ALS Research at UBC, will lead a new clinical research team, which will run clinical treatment trials and translational research studies. Plans are underway to hire clinical research personnel, including a research manager, one or more research coordinators and research assistants.
“In order for us to develop effective treatments and hopefully a cure for ALS, it is essential to identify biomarkers of disease onset, progression and response to experimental therapies,” says Dr. Pioro. “Our goal is for every person living with ALS in BC, who is eligible, to have the opportunity to participate in clinical trials.”
Along with collecting biological tissue and neuroimaging data from patients, a repository of clinical information recorded during clinic visits will be established. This will allow the research team to analyze and study the data in relation to collected samples in the DMBCH’s biobank from patients with ALS and related MNDs.
The close proximity to researchers already engaged in ALS-related or complementary research areas at the DMCBH, such as Dr. Neil Cashman, will lead to better synergies and allow for collaborations with other researchers using techniques that are also beneficial in studying disease mechanisms of ALS and its form overlapping with frontotemporal dementia (FTD). These include Dr. Haakon Nygaard, who is applying stem cell approaches to Alzheimer disease and FTD research, and Dr. Sriram Subramaniam, who is using cryo-electron microscopy to study protein-protein and protein-drug interactions at a molecular level.
“The DMCBH provides a unique environment where scientists and clinicians are working together to accelerate the translational research process,” says Dr. Pioro. “The new ALSRD Clinic at the DMCBH represents a critical step forward in our collective quest to eradicate ALS and related disorders.”
As part of PROJECT HOPE, the ALS Society of BC has created the Professorship in ALS Research at UBC. Its main objective is to enhance clinical care by promoting advanced ALS research and treatment innovations, with the ultimate goal of creating a world-class ALS Centre at UBC and a world free of ALS.
