For the last four years, the听Clinical Biologic Imaging and Genetic听(C-BIG)听Repository听has been recruiting patients and healthy controls, as well as collecting longitudinal and clinical听information, imaging, and genetic data. This collection听is听now听open听to outside collaborators,听and its director,听Dr. Jason Karamchandani,听is calling on researchers to听access the data听and听provide听feedback听to听improve听the portal听over time.听
鈥淭his is a very exciting time,鈥澨齢e听says. 鈥淲e have worked听hard听to establish听an ethical framework听that allows us to recruit from both adult and pediatric populations.听To date, we have听recruited听nearly听3,000 patients and healthy controls.鈥澨�
The听C-BIG听Repository听is an Open Science collection of biological samples, clinical information, imaging and data from听people听with neurological disorders as well as healthy research participants.听It听was established in 2016听as part of The Neuro鈥檚 Tanenbaum Open Science Institute.听听
Since then,听Dr. Karamchandani and his team have been collecting听and storing听biospecimens, clinical, imaging,听and genetic data to create a听repository that听scientists听around听the world can use to听investigate neurological disorders听with an aim to听develop听better treatments. Of the听nearly听3,000 individuals included in the biobank,听more than听1,000 have had听some form of genome-wide interrogation.听C-BIG鈥檚 largest collections are from patients with听Parkinson鈥檚 disease, ALS, neuromuscular diseases, with growing collections in multiple sclerosis, autism, and听fronto-temporal lobar dementia.听
The most challenging aspect听was听building听this听platform听with the principles of Open Science at the forefront.听While听many听other biobanks exist,听the听C-BIG听Repository听is听unique because听the framework incorporated the principles of Open Science听from the start. From the patient consent process onward, the team had to design听tools that would allow for data sharing while respecting听and protecting听patient听privacy. One of the听solutions听was to implement听a system of听tiered-access where certain data is听fully听open,听while data that is more sensitive requires听an electronic signature听that听the user agrees to terms and conditions; the user essentially promises 鈥榯o do no harm鈥�. As for biological samples听such as听cerebrospinal fluid that are non-renewable, a听鈥楾issue and Data鈥櫶齝ommittee considers听each听access听request on a case-by-case basis.听听
鈥淲e weren't just able to reinvent the wheel,鈥澨齭ays Dr. Karamchandani. 鈥淲e are听building something quite unique here, and we听had to听innovate听as听the project evolved.鈥澨�
Now that the platform is live听(), researchers can access the听data portal听and听select relevant听data to advance their research.听Dr. Karamchandani hopes that听users will听provide feedback that will help the C-BIG听team听make听improvements听to help build the most useful tool for the research community.听鈥淚t is听a co-development phase鈥�, Dr. Karamchandani says,听鈥渨here researchers get to be part of听the听C-BIG听Repository鈥檚听implementation听and growth.鈥澨�
鈥淲e don't want to create this in a vacuum,鈥� he says. 鈥淲e want to build something our users need, not something that we think they need.鈥澨�
Dr. Karamchandani says he looks forward to seeing the research that听is enabled by听the C-BIG听Repository, and is proud of the role it will play in the future of听neuroscientific听research.听听
鈥淭his data听was collected with the aim of sharing it with the broader scientific community,鈥� he says. 鈥淎nd that's really what's fundamentally听unique听about this. At every point in time, we were expecting to share this data with investigators around the world.鈥澨�
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