5 results on '"Jason, Karamchandani"'
Search Results
2. The C-BIG Repository: an Institution-Level Open Science Platform.
- Author
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Samir Das, Rida Abou-Haidar, Henri Rabalais, Sonia Denise Lai Wing Sun, Zaliqa Rosli, Krishna Chatpar, Marie-Noëlle Boivin, Mahdieh Tabatabaei, Christine Rogers, Melanie Legault, Derek Lo, Clotilde Degroot, Alain Dagher, Stephanie O. M. Dyke, Thomas M. Durcan, Annabel Seyller, Julien Doyon, Viviane Poupon, Edward A. Fon, Angela Genge, Guy A. Rouleau, Jason Karamchandani, and Alan C. Evans
- Published
- 2022
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3. The C-BIG Repository: an Institution-Level Open Science Platform
- Author
-
Alain Dagher, Samir Das, Melanie Legault, Rida Abou-Haidar, Clotilde Degroot, Annabel Seyller, Thomas M. Durcan, Henri Rabalais, Derek Lo, Stephanie O.M. Dyke, Viviane Poupon, Marie-Noëlle Boivin, Christine Rogers, Julien Doyon, Sonia Denise Lai Wing Sun, Krishna Chatpar, Guy A. Rouleau, Angela Genge, Zaliqa Rosli, Mahdieh Tabatabaei, Edward A. Fon, Jason Karamchandani, and Alan C. Evans
- Subjects
0303 health sciences ,Open science ,Computer science ,General Neuroscience ,Interoperability ,Data science ,Biobank ,Data access layer ,Data sharing ,03 medical and health sciences ,Open data ,0302 clinical medicine ,Workflow ,030217 neurology & neurosurgery ,Software ,030304 developmental biology ,Information Systems ,Clinical data repository - Abstract
In January 2016, the Montreal Neurological Institute-Hospital (The Neuro) declared itself an Open Science organization. This vision extends beyond efforts by individual scientists seeking to release individual datasets, software tools, or building platforms that provide for the free dissemination of such information. It involves multiple stakeholders and an infrastructure that considers governance, ethics, computational resourcing, physical design, workflows, training, education, and intra-institutional reporting structures. The C-BIG repository was built in response as The Neuro’s institutional biospecimen and clinical data repository, and collects biospecimens as well as clinical, imaging, and genetic data from patients with neurological disease and healthy controls. It is aimed at helping scientific investigators, in both academia and industry, advance our understanding of neurological diseases and accelerate the development of treatments. As many neurological diseases are quite rare, they present several challenges to researchers due to their small patient populations. Overcoming these challenges required the aggregation of datasets from various projects and locations. The C-BIG repository achieves this goal and stands as a scalable working model for institutions to collect, track, curate, archive, and disseminate multimodal data from patients. In November 2020, a Registered Access layer was made available to the wider research community at https://cbigr-open.loris.ca, and in May 2021 fully open data will be released to complement the Registered Access data. This article outlines many of the aspects of The Neuro’s transition to Open Science by describing the data to be released, C-BIG’s full capabilities, and the design aspects that were implemented for effective data sharing.
- Published
- 2021
4. Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem
- Author
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Stephanie O. M. Dyke, Kathleen Connor, Victoria Nembaware, Nchangwi S. Munung, Kathy Reinold, Giselle Kerry, Mamana Mbiyavanga, Lyndon Zass, Mauricio Moldes, Samir Das, John M. Davis, Jordi Rambla De Argila, J. Dylan Spalding, Alan C. Evans, Nicola Mulder, and Jason Karamchandani
- Subjects
Consent ,Ethics ,General Neuroscience ,Data sharing ,Open science ,Data access ,Data management ,Software ,Information Systems - Abstract
We previously proposed a structure for recording consent-based data use 'categories' and 'requirements' - Consent Codes - with a view to supporting maximum use and integration of genomic research datasets, and reducing uncertainty about permissible re-use of shared data. Here we discuss clarifications and subsequent updates to the Consent Codes (v4) based on new areas of application (e.g., the neurosciences, biobanking, H3Africa), policy developments (e.g., return of research results), and further practical considerations, including developments in automated approaches to consent management. SOMD, SD, ACE and JK were supported by The Neuro Tanenbaum Open Science Institute, the Canadian Open Neuroscience Platform (funded in part by Brain Canada), and McGill Healthy Brains for Healthy Lives. NM and LZ are funded by the NIH under grant number U24HG006941. MM is funded by EUH2020 CINECA grant number 825775. NM, VN and NSM are funded by the NHLBI award number U24HL135600. JDS and GK are funded by the Wellcome Trust grant 360G-Wellcome-201535_Z_16_Z and previously the EU H2020 Corbel grant number 645248.
- Published
- 2022
5. The C-BIG Repository: an Institution-Level Open Science Platform
- Author
-
Samir, Das, Rida, Abou-Haidar, Henri, Rabalais, Sonia Denise Lai Wing, Sun, Zaliqa, Rosli, Krishna, Chatpar, Marie-Noëlle, Boivin, Mahdieh, Tabatabaei, Christine, Rogers, Melanie, Legault, Derek, Lo, Clotilde, Degroot, Alain, Dagher, Stephanie O M, Dyke, Thomas M, Durcan, Annabel, Seyller, Julien, Doyon, Viviane, Poupon, Edward A, Fon, Angela, Genge, Guy A, Rouleau, Jason, Karamchandani, and Alan C, Evans
- Subjects
Information Dissemination ,Humans ,Software - Abstract
In January 2016, the Montreal Neurological Institute-Hospital (The Neuro) declared itself an Open Science organization. This vision extends beyond efforts by individual scientists seeking to release individual datasets, software tools, or building platforms that provide for the free dissemination of such information. It involves multiple stakeholders and an infrastructure that considers governance, ethics, computational resourcing, physical design, workflows, training, education, and intra-institutional reporting structures. The C-BIG repository was built in response as The Neuro's institutional biospecimen and clinical data repository, and collects biospecimens as well as clinical, imaging, and genetic data from patients with neurological disease and healthy controls. It is aimed at helping scientific investigators, in both academia and industry, advance our understanding of neurological diseases and accelerate the development of treatments. As many neurological diseases are quite rare, they present several challenges to researchers due to their small patient populations. Overcoming these challenges required the aggregation of datasets from various projects and locations. The C-BIG repository achieves this goal and stands as a scalable working model for institutions to collect, track, curate, archive, and disseminate multimodal data from patients. In November 2020, a Registered Access layer was made available to the wider research community at https://cbigr-open.loris.ca , and in May 2021 fully open data will be released to complement the Registered Access data. This article outlines many of the aspects of The Neuro's transition to Open Science by describing the data to be released, C-BIG's full capabilities, and the design aspects that were implemented for effective data sharing.
- Published
- 2021
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