It could be easier – and much cheaper – for physicians to order genetic testing for patients with neurodegenerative diseases in Ontario.
Researchers with the Ontario Neurodegenerative Disease Research Initiative (ONDRI) have developed Canada’s first genetic test panel for people with neurodegenerative diseases like Alzheimer’s disease, Amyotrophic Lateral Sclerosis (ALS) and Parkinson’s disease.
Currently, physicians in Ontario have to order genetic testing from out-of-country, and costs can be seven or eight times what this new Canadian-based test would cost. On top of that, doctors have to apply to the Ontario Ministry of Health each time they need to order testing out of country.
It’s the hope of ONDRI researchers that their test would be easily available through OHIP.
For patients with neurodegenerative diseases and their families, genetic testing can be imperative.
“First of all, it offers an explanation to patients and their families as to the etiology of their neurodegenerative condition,” says Dr. Mario Masellis, a clinician-scientist with Sunnybrook Health Sciences Centre’s Division of Neurology and Associate Professor of Medicine at the University of Toronto.
In situations where a disease like ALS seems to be running through a family, genetic testing can help physicians and their patients better understand the underlying genetic causes. It also opens the door for unaffected family members to receive genetic testing to help them understand and manage their future risk.
“A lot of people see their parent with a neurodegenerative disease and they wonder ‘Is this going to happen to me?’ It’s an emotional toll. And when they find out their own risk, they find that emotional toll can go down, even if they are predisposed for the disease,” says Allison Dilliott a graduate student who has been working on the ONDRI genetic test panel.
For these family members, understanding their genetic risk can also help them plan for the future. For example, choosing to have children and career planning, says Dr. Masellis.
Genetic testing can also help patients qualify for clinical trials.
“There are clinical trials of new therapeutics being conducted for rare genetic forms of dementia, and knowing if you are a gene carrier may help you decide if it is worthwhile for you to participate,” says Dr. Masellis.
This genetic test panel — called ONDRISeq — is currently being used in research studies ONDRI investigators have been conducting.
The research group behind the test’s development hopes to lobby the Ontario government to have ONDRISeq funded by OHIP, and readily available in a clinical setting.
Other than the possibility of an easier and cheaper genetic test available to Canadians, ONDRISeq’s other benefit is that it’s more comprehensive than the already available tests out of country. The test examines 80 different genes across five neurodegenerative diseases, whereas the other tests examine far fewer genes, and are disease-specific, for the most part. This would allow for better patient care, says Dr. Masellis.
ONDRI is an Ontario research collaboration composed of over 50 researchers and clinicians who are investigating common early indicators and risk factors of five diseases associated with dementia: Alzheimer’s disease, Parkinson’s disease, amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), frontotemporal lobar degeneration, and vascular cognitive impairment (resulting from stroke).