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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

机译：泛加拿大受遗传代谢疾病影响的队列研究的临床数据收集质量评估：从加拿大遗传代谢病研究网络中汲取的经验教训

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摘要

Location of Canadian Hereditary Metabolic Treatment Centres that are participating in CIMDRN ( = 14)

机译：参加CIMDRN的加拿大遗传代谢治疗中心的位置（= 14）

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期刊名称 Orphanet Journal of Rare Diseases
作者
Kylie Tingley; Monica Lamoureux; Michael Pugliese; Michael T. Geraghty; Jonathan B. Kronick; Beth K. Potter; Doug Coyle; Kumanan Wilson; Michael Kowalski; Valerie Austin; Catherine Brunel-Guitton; Daniela Buhas; Alicia K. J. Chan; Sarah Dyack; Annette Feigenbaum; Alette Giezen; Sharan Goobie; Cheryl R. Greenberg; Shailly Jain Ghai; Michal Inbar-Feigenberg; Natalya Karp; Mariya Kozenko; Erica Langley; Matthew Lines; Julian Little; Jennifer MacKenzie; Bruno Maranda; Saadet Mercimek-Andrews; Connie Mohan; Aizeddin Mhanni; Grant Mitchell; John J. Mitchell; Laura Nagy; Melanie Napier; Amy Pender; Murray Potter; Chitra Prasad; Suzanne Ratko; Ramona Salvarinova; Andreas Schulze; Komudi Siriwardena; Neal Sondheimer; Rebecca Sparkes; Sylvia Stockler-Ipsiroglu; Yannis Trakadis; Lesley Turner; Clara Van Karnebeek; Hilary Vallance; Anthony Vandersteen; Jagdeep Walia; Ashley Wilson; Brenda J. Wilson; Andrea C. Yu; Nataliya Yuskiv; Pranesh Chakraborty; on behalf of the Canadian Inherited Metabolic Diseases Research Network;
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年(卷),期 2020(15),-1
年度 2020
页码 -1
总页数 12
原文格式 PDF
正文语种
中图分类医学史;
关键词
Inherited metabolic diseases; Observational research; Registry science; Data quality; Database; Sustainability;

机译：遗传性代谢疾病;观察研究;登记学;数据质量;数据库;可持续性;

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专利

1. Building a pan-Canadian practice-based research network for inherited metabolic diseases: The first two years of the Canadian Inherited Metabolic Diseases Research Network (CIMDRN) [J] . Potter Beth K., Chakraborty Pranesh, Coyle Doug, Clinical Biochemistry . 2014,第15期

机译：建立基于全加拿大实践的遗传代谢疾病研究网络：加拿大遗传代谢疾病研究网络（CIMDRN）的头两年
2. VARIATION IN DIAGNOSTIC CARE AND DISEASE CLASSIFICATION STRATEGIES FOR PAH DEFICIENCY: UPDATED FINDINGS FROM THE CANADIAN INHERITED METABOLIC DISEASES RESEARCH NETWORK (CIMDRN) [J] . Kronick Jonathan B., Pugliese Michael, Tingley Kylie, Molecular genetics and metabolism . 2018,第3期

机译：PAH缺乏诊断保健和疾病分类策略的变异：加拿大遗传性代谢疾病研究网络（CIMDRN）的更新结果
3. VARIATION IN DIAGNOSTIC CARE AND DISEASE CLASSIFICATION STRATEGIES FOR PAH DEFICIENCY: UPDATED FINDINGS FROM THE CANADIAN INHERITED METABOLIC DISEASES RESEARCH NETWORK (CIMDRN) [J] . Kronick Jonathan B., Pugliese Michael, Tingley Kylie, Molecular genetics and metabolism . 2018,第3期

机译：PAH缺乏诊断保健和疾病分类策略的变异：加拿大遗传性代谢疾病研究网络（CIMDRN）的更新结果
4. Optimization of laboratory MS/MS newborn screening of inherited metabolic diseases [C] . Josef Bartl, Petr Chrastina, Jakub Hodik, International Mass Spectrometry Conference . 2014

机译：优化实验室MS / MS新生儿筛查遗传性代谢疾病
5. Referral Patterns and Utilization of Clinical Genetic Testing for Patients With Inherited Cardiac Disease [D] . Myers, Olivia 2012

机译：遗传性心脏病患者的转诊模式和临床基因检测的利用
6. Metabolic Clinic Atlas: Organization of Care for Children with Inherited Metabolic Disease in Canada [O] . Monica F. Lamoureux, Kylie Tingley, Jonathan B. Kronick, 2015

机译：代谢临床图集：加拿大遗传性代谢疾病儿童的护理组织
7. Review and evaluation of the methodological quality of the existing guidelines and recommendations for inherited neurometabolic disorders Inherited metabolic diseases [O] . Cassis, Linda, Cortès-Saladelafont, Elisenda, Molero-Luis, Marta, 2015

机译：审查和评估遗传性神经代谢疾病现有指南和建议的方法学质量
8. Inherited Retinal Degenerative Disease Clinical Trials Network. [R] . Zilliox, P. 2014

机译：遗传性视网膜退行性疾病临床试验网络。

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

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