International spinal cord injury endocrine and metabolic extended data set.
OBJECTIVE
The objective of this study was to develop the International Spinal Cord Injury (SCI) Endocrine and Metabolic Extended Data Set (ISCIEMEDS) within the framework of the International SCI Data Sets that would facilitate consistent collection and reporting of endocrine and metabolic findings in the SCI population.


METHODS
This study was conducted in an international setting.


METHODS
The ISCIEMEDS was developed by a working group. The initial ISCIEMEDS was revised based on suggestions from members of the International SCI Data Sets Committee, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, American Spinal Injury Association (ASIA) Board, other interested organizations, societies and individual reviewers. The data set was posted for two months on ISCoS and ASIA websites for comments. Variable names were standardized, and a suggested database structure for the ISCIEMEDS was provided by the Common Data Elements (CDEs) project at the National Institute on Neurological Disorders and Stroke (NINDS) of the US National Institute of Health (NIH), and are available at https://commondataelements.ninds.nih.gov/SCI.aspx#tab=Data_Standards.


RESULTS
The final ISCIEMEDS contains questions on the endocrine and metabolic conditions related to SCI. Because the information may be collected at any time, the date of data collection is important to determine the time after SCI. ISCIEMEDS includes information on carbohydrate metabolism (6 variables), calcium and bone metabolism (12 variables), thyroid function (9 variables), adrenal function (2 variables), gonadal function (7 variables), pituitary function (6 variables), sympathetic nervous system function (1 variable) and renin-aldosterone axis function (2 variables).


CONCLUSIONS
The complete instructions for data collection and the data sheet itself are freely available on the website of ISCoS (http://www.iscos.org.uk/international-sci-data-sets).
Department of Veterans Affairs Rehabilitation Research & Development, National Center for the Medical Consequences of Spinal Cord Injury, James J Peters Veterans Affairs Medical Center, New York, NY, USA.|Department of Medicine, The Icahn School of Medicine Mount Sinai,New York, NY, USA.|Department of Rehabilitation Medicine, The Icahn School of Medicine Mount Sinai, New York, NY, USA.
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WA
Bauman
Department of Veterans Affairs Rehabilitation Research & Development, National Center for the Medical Consequences of Spinal Cord Injury, James J Peters Veterans Affairs Medical Center, New York, NY, USA.|Department of Medicine, The Icahn School of Medicine Mount Sinai,New York, NY, USA.|Department of Rehabilitation Medicine, The Icahn School of Medicine Mount Sinai, New York, NY, USA.
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JM
Wecht
Clinic for Spinal Cord Injuries, Rigshospitalet, NeuroScience Center, University of Copenhagen, Copenhagen, Denmark.
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Biering-Sørensen
D000293:Adolescent; D000328:Adult; D000368:Aged; D065709:Common Data Elements; D016208:Databases, Factual / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D007391:International Cooperation; D008297:Male; D008659:Metabolic Diseases / Q000378:metabolism* / Q000628:therapy; D008875:Middle Aged; D055825:National Institute of Neurological Disorders and Stroke (U.S.); D013119:Spinal Cord Injuries / Q000378:metabolism* / Q000628:therapy; D014481:United States; D055815:Young Adult