Common data elements for clinical research in mitochondrial disease: a National Institute for Neurological Disorders and Stroke project

Objectives The common data elements (CDE) project was developed by the National Institute of Neurological Disorders and Stroke (NINDS) to provide clinical researchers with tools to improve data quality and allow for harmonization of data collected in different research studies. CDEs have been create...

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Published in	Journal of inherited metabolic disease Vol. 40; no. 3; pp. 403 - 414
Main Authors	Karaa, Amel, Rahman, Shamima, Lombès, Anne, Yu-Wai-Man, Patrick, Sheikh, Muniza K., Alai-Hansen, Sherita, Cohen, Bruce H., Dimmock, David, Emrick, Lisa, Falk, Marni J., McCormack, Shana, Mirsky, David, Moore, Tony, Parikh, Sumit, Shoffner, John, Taivassalo, Tanja, Tarnopolsky, Mark, Tein, Ingrid, Odenkirchen, Joanne C., Goldstein, Amy
Format	Journal Article
Language	English
Published	Dordrecht Springer Netherlands 01.05.2017
Subjects	Biochemistry Biomedical Research - standards Common Data Elements - standards Data Collection - standards Human Genetics Humans Internal Medicine Medicine Medicine & Public Health Metabolic Diseases Mitochondrial Diseases - pathology National Institute of Neurological Disorders and Stroke (U.S.) Nervous System Diseases - pathology Original Article Pediatrics Research Design - standards Stroke - pathology United States Mitochondrial Disorder Thymidine Phosphorylase Mitochondrial Disease Friedreich Ataxia Common Data Element
Online Access	Get full text
ISSN	0141-8955 1573-2665 1573-2665
DOI	10.1007/s10545-017-0035-5

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Abstract	Objectives The common data elements (CDE) project was developed by the National Institute of Neurological Disorders and Stroke (NINDS) to provide clinical researchers with tools to improve data quality and allow for harmonization of data collected in different research studies. CDEs have been created for several neurological diseases; the aim of this project was to develop CDEs specifically curated for mitochondrial disease (Mito) to enhance clinical research. Methods Nine working groups (WGs), composed of international mitochondrial disease experts, provided recommendations for Mito clinical research. They initially reviewed existing NINDS CDEs and instruments, and developed new data elements or instruments when needed. Recommendations were organized, internally reviewed by the Mito WGs, and posted online for external public comment for a period of eight weeks. The final version was again reviewed by all WGs and the NINDS CDE team prior to posting for public use. Results The NINDS Mito CDEs and supporting documents are publicly available on the NINDS CDE website ( https://commondataelements.ninds.nih.gov/ ), organized into domain categories such as Participant/Subject Characteristics, Assessments, and Examinations. Conclusion We developed a comprehensive set of CDE recommendations, data definitions, case report forms (CRFs), and guidelines for use in Mito clinical research. The widespread use of CDEs is intended to enhance Mito clinical research endeavors, including natural history studies, clinical trial design, and data sharing. Ongoing international collaboration will facilitate regular review, updates and online publication of Mito CDEs, and support improved consistency of data collection and reporting.
AbstractList	The common data elements (CDE) project was developed by the National Institute of Neurological Disorders and Stroke (NINDS) to provide clinical researchers with tools to improve data quality and allow for harmonization of data collected in different research studies. CDEs have been created for several neurological diseases; the aim of this project was to develop CDEs specifically curated for mitochondrial disease (Mito) to enhance clinical research.OBJECTIVESThe common data elements (CDE) project was developed by the National Institute of Neurological Disorders and Stroke (NINDS) to provide clinical researchers with tools to improve data quality and allow for harmonization of data collected in different research studies. CDEs have been created for several neurological diseases; the aim of this project was to develop CDEs specifically curated for mitochondrial disease (Mito) to enhance clinical research.Nine working groups (WGs), composed of international mitochondrial disease experts, provided recommendations for Mito clinical research. They initially reviewed existing NINDS CDEs and instruments, and developed new data elements or instruments when needed. Recommendations were organized, internally reviewed by the Mito WGs, and posted online for external public comment for a period of eight weeks. The final version was again reviewed by all WGs and the NINDS CDE team prior to posting for public use.METHODSNine working groups (WGs), composed of international mitochondrial disease experts, provided recommendations for Mito clinical research. They initially reviewed existing NINDS CDEs and instruments, and developed new data elements or instruments when needed. Recommendations were organized, internally reviewed by the Mito WGs, and posted online for external public comment for a period of eight weeks. The final version was again reviewed by all WGs and the NINDS CDE team prior to posting for public use.The NINDS Mito CDEs and supporting documents are publicly available on the NINDS CDE website ( https://commondataelements.ninds.nih.gov/ ), organized into domain categories such as Participant/Subject Characteristics, Assessments, and Examinations.RESULTSThe NINDS Mito CDEs and supporting documents are publicly available on the NINDS CDE website ( https://commondataelements.ninds.nih.gov/ ), organized into domain categories such as Participant/Subject Characteristics, Assessments, and Examinations.We developed a comprehensive set of CDE recommendations, data definitions, case report forms (CRFs), and guidelines for use in Mito clinical research. The widespread use of CDEs is intended to enhance Mito clinical research endeavors, including natural history studies, clinical trial design, and data sharing. Ongoing international collaboration will facilitate regular review, updates and online publication of Mito CDEs, and support improved consistency of data collection and reporting.CONCLUSIONWe developed a comprehensive set of CDE recommendations, data definitions, case report forms (CRFs), and guidelines for use in Mito clinical research. The widespread use of CDEs is intended to enhance Mito clinical research endeavors, including natural history studies, clinical trial design, and data sharing. Ongoing international collaboration will facilitate regular review, updates and online publication of Mito CDEs, and support improved consistency of data collection and reporting. The common data elements (CDE) project was developed by the National Institute of Neurological Disorders and Stroke (NINDS) to provide clinical researchers with tools to improve data quality and allow for harmonization of data collected in different research studies. CDEs have been created for several neurological diseases; the aim of this project was to develop CDEs specifically curated for mitochondrial disease (Mito) to enhance clinical research. Nine working groups (WGs), composed of international mitochondrial disease experts, provided recommendations for Mito clinical research. They initially reviewed existing NINDS CDEs and instruments, and developed new data elements or instruments when needed. Recommendations were organized, internally reviewed by the Mito WGs, and posted online for external public comment for a period of eight weeks. The final version was again reviewed by all WGs and the NINDS CDE team prior to posting for public use. The NINDS Mito CDEs and supporting documents are publicly available on the NINDS CDE website ( https://commondataelements.ninds.nih.gov/ ), organized into domain categories such as Participant/Subject Characteristics, Assessments, and Examinations. We developed a comprehensive set of CDE recommendations, data definitions, case report forms (CRFs), and guidelines for use in Mito clinical research. The widespread use of CDEs is intended to enhance Mito clinical research endeavors, including natural history studies, clinical trial design, and data sharing. Ongoing international collaboration will facilitate regular review, updates and online publication of Mito CDEs, and support improved consistency of data collection and reporting. Objectives The common data elements (CDE) project was developed by the National Institute of Neurological Disorders and Stroke (NINDS) to provide clinical researchers with tools to improve data quality and allow for harmonization of data collected in different research studies. CDEs have been created for several neurological diseases; the aim of this project was to develop CDEs specifically curated for mitochondrial disease (Mito) to enhance clinical research. Methods Nine working groups (WGs), composed of international mitochondrial disease experts, provided recommendations for Mito clinical research. They initially reviewed existing NINDS CDEs and instruments, and developed new data elements or instruments when needed. Recommendations were organized, internally reviewed by the Mito WGs, and posted online for external public comment for a period of eight weeks. The final version was again reviewed by all WGs and the NINDS CDE team prior to posting for public use. Results The NINDS Mito CDEs and supporting documents are publicly available on the NINDS CDE website (https://commondataelements.ninds.nih.gov/), organized into domain categories such as Participant/Subject Characteristics, Assessments, and Examinations. Conclusion We developed a comprehensive set of CDE recommendations, data definitions, case report forms (CRFs), and guidelines for use in Mito clinical research. The widespread use of CDEs is intended to enhance Mito clinical research endeavors, including natural history studies, clinical trial design, and data sharing. Ongoing international collaboration will facilitate regular review, updates and online publication of Mito CDEs, and support improved consistency of data collection and reporting. Objectives The common data elements (CDE) project was developed by the National Institute of Neurological Disorders and Stroke (NINDS) to provide clinical researchers with tools to improve data quality and allow for harmonization of data collected in different research studies. CDEs have been created for several neurological diseases; the aim of this project was to develop CDEs specifically curated for mitochondrial disease (Mito) to enhance clinical research. Methods Nine working groups (WGs), composed of international mitochondrial disease experts, provided recommendations for Mito clinical research. They initially reviewed existing NINDS CDEs and instruments, and developed new data elements or instruments when needed. Recommendations were organized, internally reviewed by the Mito WGs, and posted online for external public comment for a period of eight weeks. The final version was again reviewed by all WGs and the NINDS CDE team prior to posting for public use. Results The NINDS Mito CDEs and supporting documents are publicly available on the NINDS CDE website ( https://commondataelements.ninds.nih.gov/ ), organized into domain categories such as Participant/Subject Characteristics, Assessments, and Examinations. Conclusion We developed a comprehensive set of CDE recommendations, data definitions, case report forms (CRFs), and guidelines for use in Mito clinical research. The widespread use of CDEs is intended to enhance Mito clinical research endeavors, including natural history studies, clinical trial design, and data sharing. Ongoing international collaboration will facilitate regular review, updates and online publication of Mito CDEs, and support improved consistency of data collection and reporting.
Author	Tarnopolsky, Mark Goldstein, Amy Tein, Ingrid Alai-Hansen, Sherita Falk, Marni J. Mirsky, David Lombès, Anne Sheikh, Muniza K. Yu-Wai-Man, Patrick Shoffner, John Cohen, Bruce H. Karaa, Amel Rahman, Shamima Moore, Tony Odenkirchen, Joanne C. Emrick, Lisa McCormack, Shana Taivassalo, Tanja Dimmock, David Parikh, Sumit
AuthorAffiliation	6 UCL Institute of Ophthalmology, London, UK 14 Institute of Ophthalmology, University College London, London, UK 18 Atlanta, GA, USA 22 National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, USA 1 Massachusetts General Hospital, Boston, MA, USA 19 McGill University, Montreal, CA, USA 7 The Emmes Corporation, Rockville, MD, USA 13 Children’s Hospital Colorado, Aurora, CO, USA 23 Children’s Hospital of Pittsburgh, 4401 Penn Avenue, Pittsburgh, PA 15224, USA 8 Akron Children’s Hospital, Akron, OH, USA 20 McMaster University, Hamilton, ON, Canada 9 Medical College of Wisconsin, Milwaukee, WI, USA 21 Hospital for Sick Children, University of Toronto, Toronto, ON, Canada 4 Wellcome Trust Centre for Mitochondrial Research, Newcastle University, Newcastle upon Tyne, UK 15 Moorfields Eye Hospital, London, UK 12 University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA 16 Department of Ophthalmology, University of California, San Francisco, USA
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BackLink	https://www.ncbi.nlm.nih.gov/pubmed/28303425$$D View this record in MEDLINE/PubMed
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References	Chinnery, Pagon, Adam, Ardinger (CR2) 2014 Yatsuga, Fujita, Ishii (CR16) 2015; 7 Parikh, Goldstein, Koenig (CR12) 2015; 17 DiMauro, Schon (CR3) 2003; 348 CR5 Camp, Krotoski, Parisi, Gwinn, Cohen, Cox, Enns, Falk, Goldstein, Gopal-Srivastava, Gorman, Hersh, Hirano, Hoffman, Karaa, MacLeod, McFarland, Mohan, Mulberg, Odenkirchen, Parikh, Rutherford, Suggs-Anderson, Tang, Vockley, Wolfe, Yannicelli, Yeske, Coates (CR1) 2016; 119 Niyazov, Kahler, Frye (CR11) 2016; 7 Richards, Aziz, Bale (CR14) 2015; 17 Gorman, Schaefer, Ng (CR4) 2015; 77 Harrison, Riggs, Maglott, Lee, Azzariti, Niehaus, Ramos, Martin, Landrum, Rehm (CR7) 2016; 89 Rahman (CR13) 2015; 38 Grinnon, Miller, Marler, Lu, Stout, Odenkirchen, Kunitz (CR6) 2012; 9 Suomalainen (CR15) 2013; 7 Lott, Leipzig, Derbeneva, Xie, Chalkia, Sarmady, Procaccio, Wallace (CR8) 2013; 44 MacArthur, Manolio, Dimmock (CR9) 2014; 508 Nightingale, Pfeffer, Bargiela, Horvath, Chinnery (CR10) 2016; 139 2016; 7 2015; 17 2015; 38 2003; 348 2013; 44 2016; 119 2015; 77 2014; 24 2016 2016; 139 2014 2013; 7 2015; 7 2016; 89 2012; 9 e_1_2_11_10_1 Chinnery PF (e_1_2_11_3_1) 2014 e_1_2_11_14_1 e_1_2_11_13_1 e_1_2_11_9_1 e_1_2_11_12_1 e_1_2_11_8_1 e_1_2_11_11_1 e_1_2_11_7_1 e_1_2_11_6_1 e_1_2_11_17_1 e_1_2_11_5_1 e_1_2_11_16_1 e_1_2_11_4_1 e_1_2_11_15_1 e_1_2_11_2_1 28980269 - J Inherit Metab Dis. 2018 Jan;41(1):151. doi: 10.1007/s10545-017-0081-z.
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a novel biomarker for human muscle-manifesting mitochondrial disorders publication-title: Expert Opin Med Diagn doi: 10.1517/17530059.2013.812070 – volume: 17 start-page: 405 year: 2015 end-page: 424 ident: CR14 article-title: Standards and guidelines for the interpretation of sequence variants: a joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology publication-title: Genet Med doi: 10.1038/gim.2015.30 – volume: 89 start-page: 8.16.1 year: 2016 end-page: 8.16.23 ident: CR7 article-title: Using ClinVar as a resource to support variant interpretation publication-title: Curr Protoc Hum Genet doi: 10.1002/0471142905.hg0816s89 – volume: 9 start-page: 322 year: 2012 end-page: 329 ident: CR6 article-title: National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods publication-title: Clin Trials doi: 10.1177/1740774512438980 – volume: 348 start-page: 2656 year: 2003 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from the Mitochondrial Medicine Society publication-title: Genet Med doi: 10.1038/gim.2014.177 – volume: 7 start-page: 814 year: 2015 end-page: 823 ident: CR16 article-title: Growth differentiation factor 15 as a useful biomarker for mitochondrial disorders publication-title: Ann Neurol doi: 10.1002/ana.24506 – year: 2014 ident: CR2 article-title: Mitochondrial disorders overview publication-title: Gene reviews – volume: 139 start-page: 1633 year: 2016 end-page: 1648 article-title: Emerging therapies for mitochondrial disorders publication-title: Brain – volume: 7 start-page: 814 year: 2015 end-page: 823 article-title: Growth differentiation factor 15 as a useful biomarker for mitochondrial disorders publication-title: Ann Neurol – volume: 77 start-page: 753 year: 2015 end-page: 759 article-title: Prevalence of nuclear and mitochondrial DNA mutations related to adult mitochondrial disease publication-title: Ann Neurol – volume: 9 start-page: 322 year: 2012 end-page: 329 article-title: 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disorders publication-title: Expert Opin Med Diagn – volume: 17 start-page: 405 year: 2015 end-page: 424 article-title: Standards and guidelines for the interpretation of sequence variants: a joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology publication-title: Genet Med – year: 2014 – year: 2016 article-title: Mitochondrial diseases – volume: 44 start-page: 1.23.1 year: 2013 end-page: 26 article-title: mtDNA variation and analysis using mitomap and mitomaster publication-title: Curr Protoc Bioinformatics – volume: 119 start-page: 187 issue: 3 year: 2016 end-page: 206 article-title: Nutritional interventions in primary mitochondrial disorders: developing an evidence base publication-title: Mol Genet Metab – volume: 89 start-page: 8.16.1 year: 2016 end-page: 8.16.23 article-title: Using ClinVar as a resource to support variant interpretation publication-title: Curr Protoc Hum Genet – volume: 7 start-page: 122 year: 2016 end-page: 137 article-title: Primary mitochondrial disease and secondary mitochondrial dysfunction: importance of distinction for diagnosis and treatment publication-title: Mol Syndromol – ident: e_1_2_11_10_1 doi: 10.1038/nature13127 – volume-title: Gene reviews year: 2014 ident: e_1_2_11_3_1 – ident: e_1_2_11_8_1 doi: 10.1002/0471142905.hg0816s89 – ident: e_1_2_11_13_1 doi: 10.1038/gim.2014.177 – ident: e_1_2_11_16_1 doi: 10.1517/17530059.2013.812070 – ident: e_1_2_11_5_1 doi: 10.1002/ana.24362 – ident: e_1_2_11_12_1 doi: 10.1159/000446586 – ident: e_1_2_11_4_1 doi: 10.1056/NEJMra022567 – ident: e_1_2_11_7_1 doi: 10.1177/1740774512438980 – ident: e_1_2_11_14_1 doi: 10.1007/s10545-015-9855-3 – ident: e_1_2_11_17_1 doi: 10.1002/ana.24506 – ident: e_1_2_11_6_1 doi: 10.1038/nrdp.2016.80 – ident: e_1_2_11_11_1 doi: 10.1093/brain/aww081 – ident: e_1_2_11_9_1 doi: 10.1002/0471250953.bi0123s44 – ident: e_1_2_11_2_1 doi: 10.1016/j.ymgme.2016.09.002 – ident: e_1_2_11_15_1 doi: 10.1038/gim.2015.30 – reference: 28980269 - J Inherit Metab Dis. 2018 Jan;41(1):151. doi: 10.1007/s10545-017-0081-z.
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SubjectTerms	Biochemistry Biomedical Research - standards Common Data Elements - standards Data Collection - standards Human Genetics Humans Internal Medicine Medicine Medicine & Public Health Metabolic Diseases Mitochondrial Diseases - pathology National Institute of Neurological Disorders and Stroke (U.S.) Nervous System Diseases - pathology Original Article Pediatrics Research Design - standards Stroke - pathology United States
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