Zobrazeno 1 - 10
of 13
pro vyhledávání: '"Nicole Pallone"'
Autor:
Ami Baba, Dawn P. Richards, Maureen Smith, Nicole Pallone, Shelley Vanderhout, Matthew Prebeg, Ellen B. M. Elsman, Beth K. Potter, Martin Offringa, Nancy J. Butcher
Publikováno v:
Research Involvement and Engagement, Vol 9, Iss 1, Pp 1-12 (2023)
Abstract Background Pediatric trials are possible through voluntary participation of children, youth (age ≤ 18 years), and their families. Despite important arguments for trialists to provide trial progress or results, and evidence that participant
Externí odkaz:
https://doaj.org/article/912f4ee4e28b4ade988b26681ba9b47f
Autor:
Andrea J. Chow, Ammar Saad, Zobaida Al‐Baldawi, Ryan Iverson, Becky Skidmore, Isabel Jordan, Nicole Pallone, Maureen Smith, Pranesh Chakraborty, Jamie Brehaut, Eyal Cohen, Sarah Dyack, Jane Gillis, Sharan Goobie, Cheryl R. Greenberg, Robin Hayeems, Brian Hutton, Michal Inbar‐Feigenberg, Shailly Jain‐Ghai, Sara Khangura, Jennifer J. MacKenzie, John J. Mitchell, Zeinab Moazin, Stuart G. Nicholls, Amy Pender, Chitra Prasad, Andreas Schulze, Komudi Siriwardena, Rebecca N. Sparkes, Kathy N. Speechley, Sylvia Stockler, Monica Taljaard, Mari Teitelbaum, Yannis Trakadis, Clara Van Karnebeek, Jagdeep S. Walia, Kumanan Wilson, Beth K. Potter
Publikováno v:
Health Expectations, Vol 27, Iss 1, Pp n/a-n/a (2024)
Abstract Introduction Children with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers
Externí odkaz:
https://doaj.org/article/c941dd28a88a4bad811ed0d7dc4b0c30
Autor:
Andrea Chow, Guylaine D'Amours, Isabel Jordan, Nicole Pallone, Maureen Smith, Pranesh Chakraborty, Zobaida Al-Baldawi, Julie Paradis, Jamie Brehaut, Alicia Chan, Eyal Cohen, Sarah Dyack, Jane Gillis, Sharan Goobie, Ian Graham, Cheryl Rockman-Greenberg, Jeremy Grimshaw, Robin Hayeems, Michal Inbar-Feigenberg, Shailly Jain-Ghai, Sara Khangura, Jennifer MacKenzie, Nathalie Major, John Mitchell, Stuart Nicholls, Amy Pender, Murray Potter, Chitra Prasad, Natalya Karp, Andreas Schulze, Komudi Siriwardena, Kathy Speechley, Sylvia Stockler, Yannis Trakadis, Clara van Karnebeek, Jagdeep Walia, Kumanan Wilson, Brenda Wilson, Andrea Yu, Beth Potter
Publikováno v:
Genetics in Medicine Open, Vol 2, Iss , Pp 101379- (2024)
Externí odkaz:
https://doaj.org/article/88ebbe3c15ba497cb11c3d55ae1cdb0b
Autor:
Shelley M. Vanderhout, Maureen Smith, Nicole Pallone, Kylie Tingley, Michael Pugliese, Pranesh Chakraborty, Sylvia Stockler, Martin Offringa, Nancy Butcher, Stuart G. Nicholls, Beth K. Potter
Publikováno v:
Research Involvement and Engagement, Vol 7, Iss 1, Pp 1-8 (2021)
Plain English summary Core outcome sets (COS) are lists of outcomes agreed upon by a group of people to be measured and reported in studies about certain diseases and populations. Core outcomes are meant to represent what is useful to study from the
Externí odkaz:
https://doaj.org/article/bc5e62045a2c4baeab27767d09c848ac
Autor:
Monica Taljaard, Sarah Dyack, Jeremy M Grimshaw, Andreas Schulze, Ian D Graham, Jamie Brehaut, Kumanan Wilson, Pranesh Chakraborty, Nathalie Major, Eyal Cohen, Yannis Trakadis, Clara van Karnebeek, Maureen Smith, Kathy Speechley, Komudi Siriwardena, Robin Z Hayeems, Sharan Goobie, Beth K Potter, Jagdeep S Walia, Jennifer J MacKenzie, Chitra Prasad, Stuart G Nicholls, Ann Jolly, Brenda J Wilson, Lisa A Prosser, Andrea J Chow, Ryan Iverson, Monica Lamoureux, Kylie Tingley, Isabel Jordan, Nicole Pallone, Zobaida Al-Baldawi, Alicia Chan, Lisa Jane Gillis, Cheryl R Greenberg, Shailly Jain-Ghai, Sara Khangura, John J Mitchell, Amy Pender, Murray Potter, Rebecca Sparkes, Sylvia Stockler, Mari Teitelbaum
Publikováno v:
BMJ Open, Vol 12, Iss 2 (2022)
Externí odkaz:
https://doaj.org/article/369201d5c61346f4959e8868e0a7f579
Autor:
Michael Pugliese, Kylie Tingley, Andrea Chow, Nicole Pallone, Maureen Smith, Alvi Rahman, Pranesh Chakraborty, Michael T. Geraghty, Julie Irwin, Laure Tessier, Stuart G. Nicholls, Martin Offringa, Nancy J. Butcher, Ryan Iverson, Tammy J. Clifford, Sylvia Stockler, Brian Hutton, Karen Paik, Jessica Tao, Becky Skidmore, Doug Coyle, Kathleen Duddy, Sarah Dyack, Cheryl R. Greenberg, Shailly Jain Ghai, Natalya Karp, Lawrence Korngut, Jonathan Kronick, Alex MacKenzie, Jennifer MacKenzie, Bruno Maranda, John J. Mitchell, Murray Potter, Chitra Prasad, Andreas Schulze, Rebecca Sparkes, Monica Taljaard, Yannis Trakadis, Jagdeep Walia, Beth K. Potter, Canadian Inherited Metabolic Diseases Research Network
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 15, Iss 1, Pp 1-15 (2020)
Abstract Background Inherited metabolic diseases (IMDs) are a group of individually rare single-gene diseases. For many IMDs, there is a paucity of high-quality evidence that evaluates the effectiveness of clinical interventions. Clinical effectivene
Externí odkaz:
https://doaj.org/article/ca64ab0b801a44c5b984cecb91d4a8b8
Autor:
Beth K. Potter, Brian Hutton, Tammy J. Clifford, Nicole Pallone, Maureen Smith, Sylvia Stockler, Pranesh Chakraborty, Pauline Barbeau, Chantelle M. Garritty, Michael Pugliese, Alvi Rahman, Becky Skidmore, Laure Tessier, Kylie Tingley, Doug Coyle, Cheryl R. Greenberg, Lawrence Korngut, Alex MacKenzie, John J. Mitchell, Stuart Nicholls, Martin Offringa, Andreas Schulze, Monica Taljaard, In collaboration with the Canadian Inherited Metabolic Diseases Research Network
Publikováno v:
Trials, Vol 18, Iss 1, Pp 1-10 (2017)
Abstract Background Inherited metabolic diseases (IMD) are a large group of rare single-gene disorders that are typically diagnosed early in life. There are important evidence gaps related to the comparative effectiveness of therapies for IMD, which
Externí odkaz:
https://doaj.org/article/935184723f7a4133894c758541043d09
Publikováno v:
Healthcare quarterly (Toronto, Ont.). 24
Building on a study to develop core outcome sets for children with rare inherited metabolic diseases, the purpose of this workshop was to inform the design of longitudinal pediatric registries that support registry-based clinical trials. This worksho
Autor:
Andrea J Chow, Ryan Iverson, Monica Lamoureux, Kylie Tingley, Isabel Jordan, Nicole Pallone, Maureen Smith, Zobaida Al-Baldawi, Pranesh Chakraborty, Jamie Brehaut, Alicia Chan, Eyal Cohen, Sarah Dyack, Lisa Jane Gillis, Sharan Goobie, Ian D Graham, Cheryl R Greenberg, Jeremy M Grimshaw, Robin Z Hayeems, Shailly Jain-Ghai, Ann Jolly, Sara Khangura, Jennifer J MacKenzie, Nathalie Major, John J Mitchell, Stuart G Nicholls, Amy Pender, Murray Potter, Chitra Prasad, Lisa A Prosser, Andreas Schulze, Komudi Siriwardena, Rebecca Sparkes, Kathy Speechley, Sylvia Stockler, Monica Taljaard, Mari Teitelbaum, Yannis Trakadis, Clara van Karnebeek, Jagdeep S Walia, Brenda J Wilson, Kumanan Wilson, Beth K Potter
Publikováno v:
BMJ open, 12(2):e055664. BMJ Publishing Group
BMJ Open, 12, 2
Paediatrics Publications
BMJ Open, 12
BMJ Open, 12, 2
Paediatrics Publications
BMJ Open, 12
IntroductionChildren with inherited metabolic diseases (IMDs) often have complex and intensive healthcare needs and their families face challenges in receiving high-quality, family centred health services. Improvement in care requires complex interve
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c3840bcc08ea0b24ca213fb094ca8c01
https://pure.amc.nl/en/publications/families-healthcare-experiences-for-children-with-inherited-metabolic-diseases(68dc8b2c-6cf6-490e-85b7-feab5291693c).html
https://pure.amc.nl/en/publications/families-healthcare-experiences-for-children-with-inherited-metabolic-diseases(68dc8b2c-6cf6-490e-85b7-feab5291693c).html
Autor:
Martin Offringa, Stuart G. Nicholls, Shelley M Vanderhout, Beth K. Potter, Sylvia Stockler, Nicole Pallone, Michael Pugliese, Pranesh Chakraborty, Nancy J. Butcher, Maureen Smith, Kylie Tingley
Publikováno v:
Research Involvement and Engagement, Vol 7, Iss 1, Pp 1-8 (2021)
Research Involvement and Engagement
Research Involvement and Engagement
Background Core outcome sets (COS) are lists of consensus-determined outcomes to be measured and reported in all clinical research studies within a disease area. While including patients and families in COS development to improve their relevance and