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Partnership with Novartis Pharmaceuticals Canada Inc. has created a faster, easier way for patients to contribute to research

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Patients can now digitally consent to be included in The Neuro鈥檚 Open Biobank (Clinical Biospecimen Imaging and Genetic Repository) and patient registry, providing a more efficient and easier way to help patients accelerate neurological disorder research and participate in clinical trials. The new platform is financially supported by Novartis Pharmaceuticals Canada Inc.

In the past, patients have had to meet in person with a clinical research coordinator while at The Neuro for an appointment or treatment. The coordinator would explain what giving consent implies, help explain and take them through the documentation. The process would normally take up to half an hour.

Patients will now be provided a link to an online portal where a virtual coordinator walks them through the new digital consent process. This will let them consider their participation on their own time, in a place most convenient for them, where they might be less pre-occupied with clinical care. The platform is designed to be user-friendly to people who may have sensory or cognitive challenges, and patients can complete the process over periods rather than all at once. It will also eliminate the need to come to the hospital, which can be a challenge for people with mobility issues.

Making participation more accessible will also serve science. Larger amounts of data from patients means researchers will be better positioned to find answers to the questions of how neurological disorders occur and how they progress. It will also aid translational research to develop new therapies. As The Neuro Open Biobank is an Open Science repository, the data patients provide is de-identified and coded before it is shared with scientists around the world using registered and controlled-access to maximize the potential for discovery while minimizing the risks to patients.

鈥淭his new platform allows us to dramatically expand our Biobank and registry recruitment as well as our work with patient groups and disease networks to find patients/people to participate in research,鈥� says Jason Karamchandani, MD, Associate Professor in the Department of Pathology and C-BIG鈥檚 director. 鈥淚t will also make the consent process less strenuous for patients.鈥�

鈥淥ur objective is always to push the traditional boundaries of innovation in ways that generate solutions which otherwise may not be possible to bring about,鈥� says Erin Keith, Vice-President, Neuroscience at Novartis Pharmaceuticals Canada Inc. 鈥淭hat鈥檚 why we so strongly believe in our partnership with The Neuro. By fostering collaboration, we can ultimately facilitate greater, more sustainable advancements in healthcare and help ensure the development of robust and continued research and science. This collaboration is a great example of Novartis鈥� commitment to reimagining medicine,鈥�

Patients who would like to share their data with the Open Biobank can contact cbig.mni [at] mcgill.ca