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

Canadian Inherited Metabolic Diseases Research Network

doi:10.1186/s13023-020-01358-z

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

Canadian Inherited Metabolic Diseases Research Network

Research output: Contribution to journal › Article › peer-review

Original language	English
Article number	89
Journal	Orphanet Journal of Rare Diseases
Volume	15
Issue number	1
DOIs	https://doi.org/10.1186/s13023-020-01358-z
Publication status	Published - Apr 10 2020
Externally published	Yes

ASJC Scopus Subject Areas

Genetics(clinical)
Pharmacology (medical)

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10.1186/s13023-020-01358-z

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Canadian Inherited Metabolic Diseases Research Network (2020). 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. Orphanet Journal of Rare Diseases, 15(1), Article 89. https://doi.org/10.1186/s13023-020-01358-z

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. / Canadian Inherited Metabolic Diseases Research Network.
In: Orphanet Journal of Rare Diseases, Vol. 15, No. 1, 89, 10.04.2020.

Research output: Contribution to journal › Article › peer-review

Canadian Inherited Metabolic Diseases Research Network 2020, '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', Orphanet Journal of Rare Diseases, vol. 15, no. 1, 89. https://doi.org/10.1186/s13023-020-01358-z

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title = "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",

author = "{Canadian Inherited Metabolic Diseases Research Network} and Kylie Tingley and Monica Lamoureux and Michael Pugliese and Geraghty, {Michael T.} and Kronick, {Jonathan B.} and Potter, {Beth K.} and Doug Coyle and Kumanan Wilson and Michael Kowalski and Valerie Austin and Catherine Brunel-Guitton and Daniela Buhas and Chan, {Alicia K.J.} and Sarah Dyack and Annette Feigenbaum and Alette Giezen and Sharan Goobie and Greenberg, {Cheryl R.} and Ghai, {Shailly Jain} and Michal Inbar-Feigenberg and Natalya Karp and Mariya Kozenko and Erica Langley and Matthew Lines and Julian Little and Jennifer MacKenzie and Bruno Maranda and Saadet Mercimek-Andrews and Connie Mohan and Aizeddin Mhanni and Grant Mitchell and Mitchell, {John J.} and Laura Nagy and Melanie Napier and Amy Pender and Murray Potter and Chitra Prasad and Suzanne Ratko and Ramona Salvarinova and Andreas Schulze and Komudi Siriwardena and Neal Sondheimer and Rebecca Sparkes and Sylvia Stockler-Ipsiroglu and Yannis Trakadis and Lesley Turner and {Van Karnebeek}, Clara and Hilary Vallance and Anthony Vandersteen and Jagdeep Walia",

note = "Funding Information: 10.3390/ijerph15081644 Kodra Y, Weinbach J, Posada-De-La-Paz M, Coi A, Lemonnier SL, van Enckevort D, et al. Recommendations for improving the quality of rare disease registries. Int J Environ Res Public Health. 2018;15:1644. 20. Gliklich RE, Dreyer NA, Leavy MB. Registries for evaluating patient outcomes: a user{\textquoteright}s guide. Third edition. Two volumes. (Prepared by the Outcome DEcIDE Center [Outcome Sciences, Inc., a Quintiles company] under Contract No. 290 2005 00351 TO7.) [Internet]. AHRQ Publ. No. 13(14)-EHC111. Rockville, MD; 2014. Available from: http://www.effectivehealthcare.ahrq.gov/registries-guide-3.cfm 21. Publisher Copyright: {\textcopyright} 2020 The Author(s).",

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doi = "10.1186/s13023-020-01358-z",

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AU - Tingley, Kylie

AU - Lamoureux, Monica

AU - Pugliese, Michael

AU - Geraghty, Michael T.

AU - Kronick, Jonathan B.

AU - Potter, Beth K.

AU - Coyle, Doug

AU - Wilson, Kumanan

AU - Kowalski, Michael

AU - Austin, Valerie

AU - Brunel-Guitton, Catherine

AU - Buhas, Daniela

AU - Chan, Alicia K.J.

AU - Dyack, Sarah

AU - Feigenbaum, Annette

AU - Giezen, Alette

AU - Goobie, Sharan

AU - Greenberg, Cheryl R.

AU - Ghai, Shailly Jain

AU - Inbar-Feigenberg, Michal

AU - Karp, Natalya

AU - Kozenko, Mariya

AU - Langley, Erica

AU - Lines, Matthew

AU - Little, Julian

AU - MacKenzie, Jennifer

AU - Maranda, Bruno

AU - Mercimek-Andrews, Saadet

AU - Mohan, Connie

AU - Mhanni, Aizeddin

AU - Mitchell, Grant

AU - Mitchell, John J.

AU - Nagy, Laura

AU - Napier, Melanie

AU - Pender, Amy

AU - Potter, Murray

AU - Prasad, Chitra

AU - Ratko, Suzanne

AU - Salvarinova, Ramona

AU - Schulze, Andreas

AU - Siriwardena, Komudi

AU - Sondheimer, Neal

AU - Sparkes, Rebecca

AU - Stockler-Ipsiroglu, Sylvia

AU - Trakadis, Yannis

AU - Turner, Lesley

AU - Van Karnebeek, Clara

AU - Vallance, Hilary

AU - Vandersteen, Anthony

AU - Walia, Jagdeep

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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

ASJC Scopus Subject Areas

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