The Canadian government is the first in the Americas to launch an Internet-based effort to help its residents with rare diseases get information they need to help combat those diseases, as well as access to drugs that may help their treatment.
Through an international portal called Orphanet, the new framework will be designed to spur research and innovation in Canada. Building on existing international experience and knowledge, it will provide Health Canada with new tools to gather and share information, including the registration of clinical trials. It will also facilitate patient participation in this highly specialized area.
Orphanet is the world's online reference portal for information on rare diseases. The Canadian health ministry says its comprehensive database of information contributes to improvements in the diagnosis, care, and treatment of patients with those diseases. With support from the Canadian Institutes of Health Research (CIHR), the portal is now available in Canada. It will provide Canadians with expert, peer-reviewed information on rare diseases, as well as a specialized services directory.
"With this launch, Canada becomes the first country from North or South America to participate in this exciting initiative," said Paul Lasko, scientific director of the CIHR Institute of Genetics. "There are many Canadian families which are affected by one of the several thousand different rare diseases. Through this one user-friendly site, these families will now benefit from services such as specialized clinics, medical laboratories, clinical trials, and registries."
Orphanet is led by a consortium coordinated by the French National Institute of Health and Medical Research . National teams are responsible for the collection of information on expert centers, medical laboratories, ongoing research and patient organizations in their country. All Orphanet teams work according to the Orphanet Standard Operating Procedures.
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