Works matching AU Tingley, Kylie

Results: 20
    1
    2

    Evaluation of the quality of clinical data collection for a pan-Canadian cohort of children affected by inherited metabolic diseases: lessons learned from the Canadian Inherited Metabolic Diseases Research Network.

    Published in:
    2020
    By:
    • Tingley, Kylie;
    • Lamoureux, Monica;
    • Pugliese, Michael;
    • Geraghty, Michael T.;
    • Kronick, Jonathan B.;
    • Potter, Beth K.;
    • Coyle, Doug;
    • Wilson, Kumanan;
    • Kowalski, Michael;
    • Austin, Valerie;
    • Brunel-Guitton, Catherine;
    • Buhas, Daniela;
    • Chan, Alicia K. J.;
    • Dyack, Sarah;
    • Feigenbaum, Annette;
    • Giezen, Alette;
    • Goobie, Sharan;
    • Greenberg, Cheryl R.;
    • Ghai, Shailly Jain;
    • Inbar-Feigenberg, Michal
    Publication type:
    journal article
    3
    4

    Correction to: Establishing a core outcome set for mucopolysaccharidoses (MPS) in children: study protocol for a rapid literature review, candidate outcomes survey, and Delphi surveys.

    Published in:
    2021
    By:
    • Howie, Alison H.;
    • Tingley, Kylie;
    • Inbar-Feigenberg, Michal;
    • Mitchell, John J.;
    • Butcher, Nancy J.;
    • Offringa, Martin;
    • Smith, Maureen;
    • Angel, Kim;
    • Gentle, Jenifer;
    • Wyatt, Alexandra;
    • Campeau, Philippe M.;
    • Chan, Alicia;
    • Chakraborty, Pranesh;
    • El Turk, Farah;
    • Mamak, Eva;
    • Mhanni, Aizeddin;
    • Skidmore, Becky;
    • Sparkes, Rebecca;
    • Stockler, Sylvia;
    • Potter, Beth K.
    Publication type:
    corrected article
    5

    Establishing a core outcome set for mucopolysaccharidoses (MPS) in children: study protocol for a rapid literature review, candidate outcomes survey, and Delphi surveys.

    Published in:
    2021
    By:
    • Howie, Alison H.;
    • Tingley, Kylie;
    • Inbar-Feigenberg, Michal;
    • Mitchell, John J.;
    • Butcher, Nancy J.;
    • Offringa, Martin;
    • Smith, Maureen;
    • Angel, Kim;
    • Gentle, Jenifer;
    • Wyatt, Alexandra;
    • Campeau, Philippe M.;
    • Chan, Alicia;
    • Chakraborty, Pranesh;
    • El Turk, Farah;
    • Mamak, Eva;
    • Mhanni, Aizeddin;
    • Skidmore, Becky;
    • Sparkes, Rebecca;
    • Stockler, Sylvia;
    • Potter, Beth K.
    Publication type:
    Literature Review
    6

    Establishing a core outcome set for mucopolysaccharidoses (MPS) in children: study protocol for a rapid literature review, candidate outcomes survey, and Delphi surveys.

    Published in:
    2021
    By:
    • Howie, Alison H.;
    • Tingley, Kylie;
    • Inbar-Feigenberg, Michal;
    • Mitchell, John J.;
    • Butcher, Nancy J.;
    • Offringa, Martin;
    • Smith, Maureen;
    • Angel, Kim;
    • Gentle, Jenifer;
    • Wyatt, Alexandra;
    • Campeau, Philippe M.;
    • Chan, Alicia;
    • Chakraborty, Pranesh;
    • El Turk, Farah;
    • Mamak, Eva;
    • Mhanni, Aizeddin;
    • Skidmore, Becky;
    • Sparkes, Rebecca;
    • Stockler, Sylvia;
    • Potter, Beth K.
    Publication type:
    journal article
    7

    Health Care for Mitochondrial Disorders in Canada: A Survey of Physicians.

    Published in:
    Canadian Journal of Neurological Sciences, 2019, v. 46, n. 6, p. 717, doi. 10.1017/cjn.2019.240
    By:
    • Paik, Karen;
    • Lines, Matthew A.;
    • Chakraborty, Pranesh;
    • Khangura, Sara D.;
    • Latocki, Maureen;
    • Al-Hertani, Walla;
    • Brunel-Guitton, Catherine;
    • Khan, Aneal;
    • Penny, Blaine;
    • Rockman-Greenberg, Cheryl;
    • Rupar, C. Anthony;
    • Sondheimer, Neal;
    • Tarnopolsky, Mark;
    • Tingley, Kylie;
    • Coyle, Doug;
    • Dyack, Sarah;
    • Feigenbaum, Annette;
    • Geraghty, Michael T.;
    • Gillis, Jane;
    • van Karnebeek, Clara D. M.
    Publication type:
    Article
    8

    Establishing core outcome sets for phenylketonuria (PKU) and medium-chain Acyl-CoA dehydrogenase (MCAD) deficiency in children: study protocol for systematic reviews and Delphi surveys.

    Published in:
    2017
    By:
    • Potter, Beth K.;
    • Hutton1,2, Brian;
    • Clifford, Tammy J.;
    • Pallone, Nicole;
    • Smith, Maureen;
    • Stockler, Sylvia;
    • Chakraborty, Pranesh;
    • Barbeau, Pauline;
    • Garritty, Chantelle M.;
    • Pugliese, Michael;
    • Rahman, Alvi;
    • Skidmore, Becky;
    • Tessier, Laure;
    • Tingley, Kylie;
    • Coyle, Doug;
    • Greenberg, Cheryl R.;
    • Korngut, Lawrence;
    • MacKenzie, Alex;
    • Mitchell, John J.;
    • Nicholls, Stuart
    Publication type:
    journal article
    9
    10

    Experiences of caregivers of children with inherited metabolic diseases: a qualitative study.

    Published in:
    2016
    By:
    • Siddiq, Shabnaz;
    • Wilson, Brenda J;
    • Graham, Ian D;
    • Lamoureux, Monica;
    • Khangura, Sara D;
    • Tingley, Kylie;
    • Tessier, Laure;
    • Chakraborty, Pranesh;
    • Coyle, Doug;
    • Dyack, Sarah;
    • Gillis, Jane;
    • Greenberg, Cheryl;
    • Hayeems, Robin Z;
    • Jain-Ghai, Shailly;
    • Kronick, Jonathan B;
    • Laberge, Anne-Marie;
    • Little, Julian;
    • Mitchell, John J;
    • Prasad, Chitra;
    • Siriwardena, Komudi
    Publication type:
    journal article
    11

    Experiences of caregivers of children with inherited metabolic diseases: a qualitative study.

    Published in:
    Orphanet Journal of Rare Diseases, 2016, v. 11, p. 1, doi. 10.1186/s13023-016-0548-2
    By:
    • Siddiq, Shabnaz;
    • Wilson, Brenda J.;
    • Graham, Ian D.;
    • Lamoureux, Monica;
    • Khangura, Sara D.;
    • Tingley, Kylie;
    • Tessier, Laure;
    • Chakraborty, Pranesh;
    • Coyle, Doug;
    • Dyack, Sarah;
    • Gillis, Jane;
    • Greenberg, Cheryl;
    • Hayeems, Robin Z.;
    • Jain-Ghai, Shailly;
    • Kronick, Jonathan B.;
    • Laberge, Anne-Marie;
    • Little, Julian;
    • Mitchell, John J.;
    • Prasad, Chitra;
    • Siriwardena, Komudi
    Publication type:
    Article
    12

    Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease.

    Published in:
    BMC Pediatrics, 2015, v. 15, n. 1, p. 1, doi. 10.1186/s12887-015-0323-x
    By:
    • Khangura, Sara D.;
    • Karaceper, Maria D.;
    • Trakadis, Yannis;
    • Mitchell, John J.;
    • Chakraborty, Pranesh;
    • Tingley, Kylie;
    • Coyle, Doug;
    • Grosse, Scott D.;
    • Kronick, Jonathan B.;
    • Laberge, Anne-Marie;
    • Little, Julian;
    • Prasad, Chitra;
    • Sikora, Lindsey;
    • Siriwardena, Komudi;
    • Sparkes, Rebecca;
    • Speechley, Kathy N.;
    • Stockler, Sylvia;
    • Wilson, Brenda J.;
    • Wilson, Kumanan;
    • Zayed, Reem
    Publication type:
    Article
    13
    14
    15

    Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups.

    Published in:
    Journal of Inherited Metabolic Disease, 2016, v. 39, n. 1, p. 139, doi. 10.1007/s10545-015-9881-1
    By:
    • Khangura, Sara;
    • Tingley, Kylie;
    • Chakraborty, Pranesh;
    • Coyle, Doug;
    • Kronick, Jonathan;
    • Laberge, Anne-Marie;
    • Little, Julian;
    • Miller, Fiona;
    • Mitchell, John;
    • Prasad, Chitra;
    • Siddiq, Shabnaz;
    • Siriwardena, Komudi;
    • Sparkes, Rebecca;
    • Speechley, Kathy;
    • Stockler, Sylvia;
    • Trakadis, Yannis;
    • Wilson, Brenda;
    • Wilson, Kumanan;
    • Potter, Beth
    Publication type:
    Article
    16

    Assessing the quality and value of metabolic chart data for capturing core outcomes for pediatric medium-chain acyl-CoA dehydrogenase (MCAD) deficiency.

    Published in:
    BMC Pediatrics, 2024, v. 24, n. 1, p. 1, doi. 10.1186/s12887-023-04393-4
    By:
    • Iverson, Ryan;
    • Taljaard, Monica;
    • Geraghty, Michael T.;
    • Pugliese, Michael;
    • Tingley, Kylie;
    • Coyle, Doug;
    • Kronick, Jonathan B.;
    • Wilson, Kumanan;
    • Austin, Valerie;
    • Brunel-Guitton, Catherine;
    • Buhas, Daniela;
    • Butcher, Nancy J.;
    • Chan, Alicia K. J.;
    • Dyack, Sarah;
    • Goobie, Sharan;
    • Greenberg, Cheryl R.;
    • Jain-Ghai, Shailly;
    • Inbar-Feigenberg, Michal;
    • Karp, Natalya;
    • Kozenko, Mariya
    Publication type:
    Article
    17
    18

    Review of clinical trials and guidelines for children and youth with mucopolysaccharidosis: outcome selection and measurement.

    Published in:
    Orphanet Journal of Rare Diseases, 2024, v. 19, n. 1, p. 1, doi. 10.1186/s13023-024-03364-x
    By:
    • Howie, Alison H.;
    • Tingley, Kylie;
    • Inbar-Feigenberg, Michal;
    • Mitchell, John J.;
    • Angel, Kim;
    • Gentle, Jenifer;
    • Smith, Maureen;
    • Offringa, Martin;
    • Butcher, Nancy J.;
    • Campeau, Philippe M.;
    • Chakraborty, Pranesh;
    • Chan, Alicia;
    • Fergusson, Dean;
    • Mamak, Eva;
    • McClelland, Peyton;
    • Mercimek-Andrews, Saadet;
    • Mhanni, Aizeddin;
    • Moazin, Zeinab;
    • Rockman-Greenberg, Cheryl;
    • Rupar, C. Anthony
    Publication type:
    Article
    19

    Using a meta-narrative literature review and focus groups with key stakeholders to identify perceived challenges and solutions for generating robust evidence on the effectiveness of treatments for rare diseases.

    Published in:
    2018
    By:
    • Tingley, Kylie;
    • Coyle, Doug;
    • Graham, Ian D.;
    • Sikora, Lindsey;
    • Chakraborty, Pranesh;
    • Wilson, Kumanan;
    • Mitchell, John J.;
    • Stockler-Ipsiroglu, Sylvia;
    • Potter, Beth K.;
    • in collaboration with the Canadian Inherited Metabolic Diseases Research Network;
    • Canadian Inherited Metabolic Diseases Research Network
    Publication type:
    journal article
    20