ALS Canada Clinical Trial Availability Update | Dec 3, 2019

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ALS Canada Clinical Trial Availability Update | Dec 3, 2019

There are currently 3 trials recruiting in Canada that are particularly important for patients with familial forms of ALS. Please pass the following information on to anyone who has developed ALS and think there is a family history or a documented gene mutation that is believed to have caused their ALS:

  1. A Phase 3 trial -The VALOR clinical trial (ClinicalTrials.gov Identifier: NCT02623699), is actively recruiting patients with a confirmed SOD1 mutation, or suspected family history of ALS. The trial has a full travel program in place, covering flights, hotels, and ground transportation for patients within less than 6 hours of flying time from a trial site. Accelerated genetic testing for the SOD1 gene is available through the clinical trial, with genetic counselling support provided. We are encouraging all patients with either confirmed SOD1 mutations, or a suspected family history, to reach out to obtain more information. Family members of patients known to have had an SOD1 mutation are also very welcome to contact the sites to obtain more information about the trial. Two sites are in Canada – Montreal Neurological Hospital with Dr Angela Genge, contact Kristiana Salmon (mailto:krsitiana.salmon@mcgill.ca 514-398-1779), and Sunnybrook Hospital – Toronto with Dr Lorne Zinman.
  2. A Phase 1 trial – Biogen 245AS101 (ClinicalTrials.gov Identifier: NCT03626012), is recruiting patients with a confirmed C9orf72 repeat expansion, or have a suspected family history of ALS and/or dementia. This trial has a full travel program in place, covering flights, hotels, and ground transportation for patients within less than 6 hours of flying time from a trial site. Accelerated genetic testing for the C9orf72 repeat expansion is available through the clinical trial, with genetic counselling support provided. We are encouraging all patients with either a confirmed C9orf72 repeat exapansion, or a suspected family history, to reach out to obtain more information. This is a Phase 1 trial that recruits patients in small groups, therefore, recruitment is not always open and as such we encourage those interested to reach out early. There are multiple sites are in Canada – Montreal Neurological Hospital with Dr. Angela Genge, contact Kristiana Salmon kristiana.salmon@mcgill.ca 514-398-1779), CHUM – Montreal with Dr. Genevieve Matte, Sunnybrook Hospital – Toronto with Dr Lorne Zinman, London Health Sciences Center with Dr. Christen Shoesmith, University of Alberta with Dr. Wendy Johnston, and University of Calgary with Dr. Lawrence Korngut.
  3. A Phase 1 trial – AL-S Pharma AP101 (ClinicalTrials.gov Identifier: NCT03981536), is recruiting patients with familial ALS, with confirmed SOD1 mutation, or sporadic ALS. This is a Phase 1 trial that recruits patients in small groups, therefore, recruitment is not always open and as such we encourage those interested to reach out early. There are multiple sites are in Canada – Montreal Neurological Hospital with Dr. Angela Genge, contact Juliette Foucher (juliette.foucher@mcgill.ca 514-398-1902), Sunnybrook Hospital – Toronto with Dr Lorne Zinman, and London Health Sciences Center with Dr. Christen Shoesmith.