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1,117 results on '"Knoppers, Bartha Maria"'

1. Defining and pursuing diversity in human genetic studies

Author

Raven-Adams, Maili C., Hernandez-Boussard, Tina, Joly, Yann, Knoppers, Bartha Maria, Chandrasekharan, Subhashini, Thorogood, Adrian, Kumuthini, Judit, Ho, Calvin Wai Loon, Gonzlez, Ariana, Nelson, Sarah C., Bombard, Yvonne, Thaldar, Donrich, Liu, Hanshi, Costa, Alessia, Muralidharan, Vijaytha, Henriques, Sasha, Nasir, Jamal, Lumaka, Aimé, Kaiser, Beatrice, Jamuar, Saumya Shekhar, and Lewis, Anna C. F.

Published
2024
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2. The commitment of the human cell atlas to humanity

Author

Amit, Ido, Ardlie, Kristin, Arzuaga, Fabiana, Awandare, Gordon, Bader, Gary, Bernier, Alexander, Carninci, Piero, Donnelly, Stacey, Eils, Roland, Forrest, Alistair R. R., Greely, Henry T., Guigo, Roderic, Hacohen, Nir, Haniffa, Muzlifah, Kirby, Emily Sarah, Knoppers, Bartha Maria, Kriegstein, Arnold, Lein, Ed S., Linnarsson, Sten, Majumder, Partha P., Merad, Miriam, Meyer, Kerstin, Mhlanga, Musa M., Nolan, Garry, Ntusi, Ntobeko A. B., Pe’er, Dana, Prabhakar, Shyam, Raven-Adams, Maili, Regev, Aviv, Rozenblatt-Rosen, Orit, Saha, Senjuti, Saltzman, Andrea, Shalek, Alex K., Shin, Jay W., Stunnenberg, Henk, Teichmann, Sarah A., Tickle, Timothy, Villani, Alexandra-Chloe, Wells, Christine, Wold, Barbara, Yang, Huanming, and Zhuang, Xiaowei

Published
2024
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5. Data and Tools Integration in the Canadian Open Neuroscience Platform

Author

Poline, Jean-Baptiste, Das, Samir, Glatard, Tristan, Madjar, Cécile, Dickie, Erin W., Lecours, Xavier, Beaudry, Thomas, Beck, Natacha, Behan, Brendan, Brown, Shawn T., Bujold, David, Beauvais, Michael, Caron, Bryan, Czech, Candice, Dharsee, Moyez, Dugré, Mathieu, Evans, Ken, Gee, Tom, Ippoliti, Giulia, Kiar, Gregory, Knoppers, Bartha Maria, Kuehn, Tristan, Le, Diana, Lo, Derek, Mazaheri, Mandana, MacFarlane, Dave, Muja, Naser, O’Brien, Emmet A., O’Callaghan, Liam, Paiva, Santiago, Park, Patrick, Quesnel, Darcy, Rabelais, Henri, Rioux, Pierre, Legault, Mélanie, Tremblay-Mercier, Jennifer, Rotenberg, David, Stone, Jessica, Strauss, Ted, Zaytseva, Ksenia, Zhou, Joey, Duchesne, Simon, Khan, Ali R., Hill, Sean, and Evans, Alan C.

Published
2023
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6. Toward better governance of human genomic data

Author

O’Doherty, Kieran C, Shabani, Mahsa, Dove, Edward S, Bentzen, Heidi Beate, Borry, Pascal, Burgess, Michael M, Chalmers, Don, De Vries, Jantina, Eckstein, Lisa, Fullerton, Stephanie M, Juengst, Eric, Kato, Kazuto, Kaye, Jane, Knoppers, Bartha Maria, Koenig, Barbara A, Manson, Spero M, McGrail, Kimberlyn M, McGuire, Amy L, Meslin, Eric M, Nicol, Dianne, Prainsack, Barbara, Terry, Sharon F, Thorogood, Adrian, and Burke, Wylie

Subjects
Agricultural, Veterinary and Food Sciences, Biological Sciences, Bioinformatics and Computational Biology, Genetics, Agricultural Biotechnology, Human Genome, Generic health relevance, Peace, Justice and Strong Institutions, Databases, Genetic, Genome, Human, Genomics, Humans, Internationality, Medical and Health Sciences, Developmental Biology, Agricultural biotechnology, Bioinformatics and computational biology
Abstract

In this Commentary, we argue that in line with the dramatic increase in the collection, storage, and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to address the dual objectives of enabling wide access while protecting against possible harms. However, there are ongoing debates in the scientific community about the merits and limitations of different governance frameworks in achieving these twin aims; and indeed, best practices and points for consideration are notably absent when it comes to devising a governance framework for genomic databases. Based on our collective experience of devising and assessing governance frameworks, our Commentary identifies five key functions of “good governance” (or what makes “better governance”) and three areas where trade-offs should be considered when specifying policies within those functions. We apply these functions as a benchmark to describe, as an example, the governance frameworks of six large-scale international genomic projects.

Published
2021

7. Concordance of International Regulation of Pediatric Health Research

Author

Rothstein, Mark A., Patrinos, Dimitri, Brothers, Kyle B., Clayton, Ellen Wright, Joly, Yann, Zawati, Ma'n H., Andanda, Pamela, Arawi, Thalia, Castañeda, Mireya, Chalmers, Don, Chen, Haidan, Ghaly, Mohammed, Hatanaka, Ryoko, Hendriks, Aart C., Ho, Calvin W.L., Kaye, Jane, Krekora-Zając, Dorota, Lee, Won Bok, Mattsson, Titti, Nicolás, Pilar, Nnamuchi, Obiajulu, Rial-Sebbag, Emmanuelle, Siegal, Gil, Wathuta, Jane M., and Knoppers, Bartha Maria

Published
2023
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8. A response to "Personalised medicine and population health: breast and ovarian cancer".

Author

Antoniou, Antonis, Anton-Culver, Hoda, Borowsky, Alexander, Broeders, Mireille, Brooks, Jennifer, Chiarelli, Anna, Chiquette, Jocelyne, Cuzick, Jack, Delaloge, Suzette, Devilee, Peter, Dorval, Michael, Easton, Douglas, Eisen, Andrea, Eklund, Martin, Eloy, Laurence, Esserman, Laura, Garcia-Closas, Montserrat, Goldgar, David, Hall, Per, Knoppers, Bartha Maria, Kraft, Peter, La Croix, Andrea, Madalensky, Lisa, Mavaddat, Nasim, Mittman, Nicole, Nabi, Hermann, Olopade, Olufunmilayo, Pashayan, Nora, Schmidt, Marjanka, Shieh, Yiwey, Simard, Jacques, Stover-Fiscallini, Allison, Tice, Jeffrey A, Van't Veer, Laura, Wenger, Neil, Wolfson, Michael, Yau, Christina, and Ziv, Elad

Subjects
Humans, Breast Neoplasms, Ovarian Neoplasms, Health Care Costs, Female, Early Detection of Cancer, Precision Medicine, Population Health, Genetics & Heredity, Genetics, Complementary and Alternative Medicine, Paediatrics and Reproductive Medicine
Published
2019

9. Polygenic risk scores and risk-stratified breast cancer screening: Familiarity and perspectives of health care professionals

Author

Lapointe, Julie, Buron, Anne-Catherine, Mbuya-Bienge, Cynthia, Dorval, Michel, Pashayan, Nora, Brooks, Jennifer D., Walker, Meghan J., Chiquette, Jocelyne, Eloy, Laurence, Blackmore, Kristina, Turgeon, Annie, Lambert-Côté, Laurence, Leclerc, Lucas, Dalpé, Gratien, Joly, Yann, Knoppers, Bartha Maria, Chiarelli, Anna Maria, Simard, Jacques, and Nabi, Hermann

Published
2022
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18. Facilitating a culture of responsible and effective sharing of cancer genome data

Author

Siu, Lillian L, Lawler, Mark, Haussler, David, Knoppers, Bartha Maria, Lewin, Jeremy, Vis, Daniel J, Liao, Rachel G, Andre, Fabrice, Banks, Ian, Barrett, J Carl, Caldas, Carlos, Camargo, Anamaria Aranha, Fitzgerald, Rebecca C, Mao, Mao, Mattison, John E, Pao, William, Sellers, William R, Sullivan, Patrick, Teh, Bin Tean, Ward, Robyn L, ZenKlusen, Jean Claude, Sawyers, Charles L, and Voest, Emile E

Subjects
Health Services and Systems, Health Sciences, Cancer, Cancer Genomics, Biotechnology, Human Genome, Genetics, Precision Medicine, Networking and Information Technology R&D (NITRD), Good Health and Well Being, Computational Biology, Culture, Databases, Genetic, Genome, Humans, Information Dissemination, Neoplasms, Medical and Health Sciences, Immunology, Biomedical and clinical sciences, Health sciences
Abstract

Rapid and affordable tumor molecular profiling has led to an explosion of clinical and genomic data poised to enhance the diagnosis, prognostication and treatment of cancer. A critical point has now been reached at which the analysis and storage of annotated clinical and genomic information in unconnected silos will stall the advancement of precision cancer care. Information systems must be harmonized to overcome the multiple technical and logistical barriers to data sharing. Against this backdrop, the Global Alliance for Genomic Health (GA4GH) was established in 2013 to create a common framework that enables responsible, voluntary and secure sharing of clinical and genomic data. This Perspective from the GA4GH Clinical Working Group Cancer Task Team highlights the data-aggregation challenges faced by the field, suggests potential collaborative solutions and describes how GA4GH can catalyze a harmonized data-sharing culture.

Published
2016

28. Whither Health Research

Author

Patrinos, Dimitri, primary, McDougall, Robyn, additional, Beauvais, Michael J. S., additional, and Knoppers, Bartha Maria, additional

Published
2023
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40. Contributors

Author

Berg, Jonathan S., primary, Bertier, Gabrielle, additional, Bowling, Kevin M., additional, Brothers, Kyle B., additional, Buchanan, James, additional, Buyx, Alena, additional, Bylstra, Yasmin, additional, De Clercq, Eva, additional, Cooper, Gregory M., additional, Erdmann†, Pia, additional, Foreman, Ann Katherine Major, additional, Gaff, Clara, additional, Jackson, Leigh, additional, Kato, Kazuto, additional, Kaufmann, Elke, additional, Kelly, Susan, additional, Knoppers, Bartha Maria, additional, Langanke, Martin, additional, Lázaro-Muñoz, Gabriel, additional, Leitsalu, Liis, additional, Liedtke, Wenke, additional, Mertz, Marcel, additional, Milani, Lili, additional, Morrison, Michael, additional, Richter, Gesine, additional, Schaefer, G. Owen, additional, Schickhardt, Christoph, additional, Schleidgen, Sebastian, additional, Shabani, Mahsa, additional, Teare, Harriet, additional, Thompson, Michelle L., additional, Thorogood, Adrian, additional, Tutty, Erin, additional, Williams, Janet L., additional, Winkler, Eva C., additional, Wordsworth, Sarah, additional, and Zawati, Ma’n, additional

Published
2020
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41. Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening

Author

Lapointe, Julie, primary, Côté, Jean-Martin, additional, Mbuya-Bienge, Cynthia, additional, Dorval, Michel, additional, Pashayan, Nora, additional, Chiquette, Jocelyne, additional, Eloy, Laurence, additional, Turgeon, Annie, additional, Lambert-Côté, Laurence, additional, Brooks, Jennifer D., additional, Walker, Meghan J., additional, Blackmore, Kristina Maria, additional, Joly, Yann, additional, Knoppers, Bartha Maria, additional, Chiarelli, Anna Maria, additional, Simard, Jacques, additional, and Nabi, Hermann, additional

Published
2023
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45. CONP Ethics Toolkit v1.0.4

Author

Beauvais, Michael J.S., Knoppers, Bartha Maria, Cavoukian, Ann, Clarkson, John, Green-Noble, Lindsay, Illes, Judy, Karamchandani, Jason, Nadler, Roland, Roskams-Edris, Dylan, Stewart, Walter, Bermudez, Patrick, Bernier, Alexander, Lemmens, Trudo, Farrés, Marcel, Royer, Jessica, and Zatorre, Robert

Subjects
neuroscience, neuroethics, open science, human subjects research regulation, privacy, law, ethics
Abstract

CONP Ethics Toolkit consisting of: Model prospective consent clauses Retrospective consent filter De-identification information and tools This consent toolkit is the product of extended discussions and careful drafting that considers bothCanadianandinternationalethical frameworks and research practice. In adapting this consent toolkit for your own research needs, we encourage you to mention to your research ethics board that your consent materials are modeled after those created by theCONP Ethics and Governance Committee. The Committee's members include internationally recognized experts in research ethics, neuroethics, data governance, and law: Trudo Lemmens (Chair), Alexander Bernier (Manager), Ann Cavoukian, John Clarkson, Jason Karamchandani, Roland Nadler, Dylan Roskams-Edris, and Walter Stewart. Further feedback was graciously provided from members of the CONP community, in particular Patrick Bermudez, Marcel Farrés Franch, Jessica Royer, Robert Zatorre, and past Committee Members Bartha Maria Knoppers, Lindsay Green Noble, and Judy Illes. GitHub source:https://github.com/CONP-PCNO/Ethics_and_Data_Governance

Published
2023
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47. Model consent clauses for rare disease research

Author

Nguyen, Minh Thu, Goldblatt, Jack, Isasi, Rosario, Jagut, Marlene, Jonker, Anneliene Hechtelt, Kaufmann, Petra, Ouillade, Laetitia, Molnar-Gabor, Fruszina, Shabani, Mahsa, Sid, Eric, Tassé, Anne Marie, Wong-Rieger, Durhane, Knoppers, Bartha Maria, and on behalf of the IRDiRC-GA4GH Model Consent Clauses Task Force

Published
2019
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48. The Canadian Open Neuroscience Platform—An open science framework for the neuroscience community

Author

Harding, Rachel, Bermudez, Patrick, Bernier, Alexander, Beauvais, Michael J.S., Bellec, Pierre, Hill, Sean, Karakuzu, Agah, Knoppers, Bartha Maria, Pavlidis, Paul, Poline, Jean-Baptiste, Roskams, Jane, Stikov, Nikola, Stone, Jessica, Strother, Stephen C., Evans, Alan C., Harding, Rachel, Bermudez, Patrick, Bernier, Alexander, Beauvais, Michael J.S., Bellec, Pierre, Hill, Sean, Karakuzu, Agah, Knoppers, Bartha Maria, Pavlidis, Paul, Poline, Jean-Baptiste, Roskams, Jane, Stikov, Nikola, Stone, Jessica, Strother, Stephen C., and Evans, Alan C.

Abstract

The Canadian Open Neuroscience Platform (CONP) takes a multifaceted approach to enabling open neuroscience, aiming to make research, data, and tools accessible to everyone, with the ultimate objective of accelerating discovery. Its core infrastructure is the CONP Portal, a repository with a decentralized design, where datasets and analysis tools across disparate platforms can be browsed, searched, accessed, and shared in accordance with FAIR principles. Another key piece of CONP infrastructure is NeuroLibre, a preprint server capable of creating and hosting executable and fully reproducible scientific publications that embed text, figures, and code. As part of its holistic approach, the CONP has also constructed frameworks and guidance for ethics and data governance, provided support and developed resources to help train the next generation of neuroscientists, and has fostered and grown an engaged community through outreach and communications. In this manuscript, we provide a high-level overview of this multipronged platform and its vision of lowering the barriers to the practice of open neuroscience and yielding the associated benefits for both individual researchers and the wider community.

Published
2023

49. The Canadian Partnership for Tomorrow Project: a pan-Canadian platform for research on chronic disease prevention

Author

Dummer, Trevor J.B., Awadalla, Philip, Boileau, Catherine, Craig, Camille, Fortier, Isabel, Goel, Vivek, Hicks, Jason M.T., Jacquemont, Sebastien, Knoppers, Bartha Maria, Le, Nhu, McDonald, Treena, McLaughlin, John, Mes-Masson, Anne-Marie, Nuyt, Anne-Monique, Palmer, Lyle J., Parker, Louise, Purdue, Mark, Robson, Paula J., Spinelli, John J., Thompson, David, Vena, Jennifer, and Zawati, Ma'n

Subjects
Prevention, Usage, Methods, Chronic diseases -- Prevention, Questionnaires -- Usage, Cohort analysis -- Methods
Abstract

Chronic disease prevention and individualized disease management are central to public health in the 21st century. (1,2) However, the multifactorial etiology of most chronic diseases demands that we increase our [...], BACKGROUND: Understanding the complex interaction of risk factors that increase the likelihood of developing common diseases is challenging. The Canadian Partnership for Tomorrow Project (CPTP) is a prospective cohort study created as a population-health research platform for assessing the effect of genetics, behaviour, family health history and environment (among other factors) on chronic diseases. METHODS: Volunteer participants were recruited from the general Canadian population for a confederation of 5 regional cohorts. Participants were enrolled in the study and core information obtained using 2 approaches: attendance at a study assessment centre for all study measures (questionnaire, venous blood sample and physical measurements) or completion of the core questionnaire (online or paper), with later collection of other study measures where possible. Physical measurements included height, weight, percentage body fat and blood pressure. Participants consented to passive follow-up through linkage with administrative health databases and active follow-up through recontact. All participant data across the 5 regional cohorts were harmonized. RESULTS: A total of 307017 participants aged 30-74 from 8 provinces were recruited. More than half provided a venous blood sample and/or other biological sample, and 33% completed physical measurements. A total of 709 harmonized variables were created; almost 25% are available for all participants and 60% for at least 220000 participants. INTERPRETATION: Primary recruitment for the CPTP is complete, and data and biosamples are available to Canadian and international researchers through a data-access process. The CPTP will support research into how modifiable risk factors, genetics and the environment interact to affect the development of cancer and other chronic diseases, ultimately contributing evidence to reduce the global burden of chronic disease.

Published
2018
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