The Personalized Clinical Trial Support Service Assists Patients with Various Diseases, Including Rare Ones
CATALIS, under the banner Clinical Trials Quebec, is continuing the pilot implementation of its Personalized Clinical Trial Service. This province-wide, bilingual resource is free of charge; it is designed to help Quebec patients and their caregivers, regardless of their age or medical condition. This service provides patients with a friendly and personal support in their search for a clinical trial that meets their specific criteria while answering their questions about clinical research.
Based on the Politique québécoise pour les maladies rares (Quebec policy on rare diseases – in French only) introduced earlier this year by the Quebec government, the Personalized Clinical Trial Support Service works closely with the Regroupement québécois des maladies orphelines (RQMO, a provincial coalition of orphan diseases) and collaborates with seven other patient associations.
“Of the thousands of known rare diseases, only a few hundred have a specific treatment. The others are so-called orphan diseases. The Personalized Clinical Trial Support Service will allow people with orphan diseases and parents of children with orphan diseases to learn about and possibly participate in ongoing clinical trials or be aware of the therapeutic advances made for their disease.” – Gail Ouellette, president and scientific director of the Regroupement québécois des maladies orphelines (RQMO)
8 patient associations have already participated in the Personalized Clinical Trial Support Service’s pilot
Since the launch of its pilot in July 2022, the Personalized Clinical Trial Support Service has been working with the following patient associations: the Regroupement québécois des maladies orphelines (RQMO), the Amyotrophic Lateral Sclerosis Society of Quebec (ALS-Quebec), Muscular Dystrophy Canada (MDC), the Multiple Sclerosis Society of Canada – Quebec Division, the Federation of Quebec Alzheimer Societies, Colorectal Cancer Canada, Myeloma Canada and the Arthritis Society Canada.
In conjunction with the service offered to patients and caregivers, CATALIS has initiated, in collaboration with its partner institutions, the pilot of the Personalized Clinical Trial Support Service for health network professionals.
“Clinical trials can give cancer patients the opportunity to access first-class clinical trials and help to advance research in Canada. However, finding the right clinical trial at the right time is a real challenge for patients. The Personalized Clinical Trial Support Service will help patients, caregivers, and health professionals not to miss new opportunities to find a clinical trial, in addition to allowing future patients to benefit from innovations in cancer treatment. We are delighted to be working together on this important project.” – Barry Stein, president of Colorectal Cancer Canada
“We are very pleased to be part of this initiative, which will directly support members of our community in their search for clinical trials. For patients, choosing a clinical trial as a treatment option often involves clarifying several new concepts or even deconstructing certain myths. In addition to all the tools we have developed to support patients in their clinical trial research process, Clinical Trials Quebec’s Personalized Clinical Trial Support Service will be able to help them determine if this route is a good option for them, regardless of the stage of their journey with myeloma.”- Martine Elias, executive director of Myeloma Canada
“We sincerely hope to see innovative treatments being developed, which will ultimately allow people with MS to live better with the disease. Beyond slowing the disease’s progression, the desired outcome for the MS community in Quebec is better knowledge of available clinical trials and faster and easier access to them. Clinical Trials Quebec’s Personalized Clinical Trial Support Service will meet this need.” – Louis Adam, president, Quebec Division – Multiple Sclerosis Society of Canada
“Research offers hope to people with neuromuscular disease. Clinical Trials Quebec’s new Personalized Clinical Trial Support Service will allow Muscular Dystrophy Canada clients across Quebec to get better access to clinical trials and play an active role in research. Clinical trials are a crucial step in potentially developing new treatments that could improve the quality of life of those affected.” – Marie-Hélène Bolduc, vice president of programs and services, Muscular Dystrophy Canada
“Without a significant commitment to clinical research (projects, awareness, recruitment, funding), no innovative remedy can be developed and make a real difference in the lives of those affected. The last treatment approved by Health Canada was more than fifteen years ago.” – Nouha Ben Gaied, PhD, director of research and development, quality of services, Quebec Federation of Alzheimer Societies
“Timely access to information, treatments, and clinical trials is essential. The Personalized Clinical Trial Support Service will effectively assist, guide, and empower families to help them find a clinical trial that could potentially prolong or save their lives, no matter where they live in Quebec.” – Claudine Cook, executive director of the Amyotrophic Lateral Sclerosis Society of Quebec (ALS-Québec)
“As Canada’s largest charitable funder of arthritis research, we know how important it is to support researchers and clinicians as they work to find potential treatments. That’s why we are pleased to be part of the new Personalized Support Service of Clinical Trials Quebec pilot project by CATALIS. We welcome this opportunity to assist Quebec patients, caregivers and healthcare professionals in their search for clinicaltrials and to improve health outcomes for the six million Canadians living with arthritis.” – Sian Bevan, Ph.D., Chief Science Officer, Arthritis Society Canada
Province-wide support made possible thanks to the Quebec government
The implementation of Clinical Trials Quebec’s Personalized Clinical Trial Support Service has been made possible thanks to the Quebec government’s renewed support for CATALIS Quebec through the 2022-2025 QLSS, as well as the support received from the Ministry of Economy, Innovation, and Energy and the Ministry of Health and Social Services. This initiative is in line with CATALIS’ mission of improving the clinical research environment in Quebec, namely by fostering patient engagement and participation in clinical trials.
Once its pilot phase has been completed, the Personalized Clinical Trial Support Service will be offered free of charge to all Quebecers and health professionals in early 2023.