Common Data Elements for Subarachnoid Hemorrhage and Unruptured Intracranial Aneurysms: Recommendations from the Working Group on Subject Characteristics

Autor: Bijlenga, P., Morita, A., Ko, N.U., Mocco, J., Morel, S., Murayama, Y., Wermer, M.J.H., Brown, R.D., Suarez, J.I., Macdonald, R.L., Amin-Hanjani, S., Manoel, A.L.D., Derdeyn, C.P., Etminan, N., Keller, E., LeRoux, P.D., Mayer, S., Rinkel, G., Rufennacht, D., Stienen, M.N., Torner, J., Vergouwen, M.D.I., Wong, G.K.C., Ko, N., McDougall, C.G., Werner, M.J.H., Damani, R., Broderick, J., Dhar, R., Jauch, E.C., Kirkpatrick, P.J., Martin, R.H., Muehlschlegel, S., Mutoh, T., Nyquist, P., Olson, D., Mejia-Mantilla, J.H., Jagt, M. van der, Bambakidis, N., Brophy, G., Bulsara, K., Claassen, J., Connolly, E.S., Hoffer, S.A., Hoh, B.L., Holloway, R.G., Kelly, A., Nakaji, P., Rabinstein, A., Vajkoczy, P., Woo, H., Zipfel, G.J., Chou, S., Dore, S., Dumont, A.S., Gunel, M., Kasuya, H., Roederer, A., Ruigrok, Y., Vespa, P.M., Sarrafzadeh-Khorrasani, A.S., Hackenberg, K., Huston, J., Krings, T., Lanzino, G., Meyers, P.M., Wintermark, M., Daly, J., Ogilvy, C., Rhoney, D.H., Roos, Y.B., Siddiqui, A., Algra, A., Frosen, J., Hasan, D., Juvela, S., Langer, D.J., Salman, R.A., Hanggi, D., Schweizer, T., Visser-Meily, J., Amos, L., Ludet, C., Moy, C., Odenkirchen, J., Ala'i, S., Esterlitz, J., Joseph, K., Sheikh, M., Unruptured Cerebral Aneurysms SAH
Přispěvatelé: Neurology, Experimental Vascular Medicine, Amsterdam Neuroscience, ACS - Atherosclerosis & ischemic syndromes, Amsterdam Neuroscience - Neurovascular Disorders, University of Zurich, Bijlenga, Philippe
Rok vydání: 2019
Předmět:
Biomedical Research
Comorbidity
Critical Care and Intensive Care Medicine
0302 clinical medicine
Ethnicity
Economic Status
Medicine
Reference population
Reproductive History
Stroke
Participant/Subject characteristics
education.field_of_study
Common Data Elements
Smoking
2728 Neurology (clinical)
Educational Status
Functional status
2706 Critical Care and Intensive Care Medicine
Employment
medicine.medical_specialty
Subarachnoid hemorrhage
Alcohol Drinking
Research Subjects
Population
Clinical Neurology
610 Medicine & health
Ethnic Groups
Research Support
N.I.H
10180 Clinic for Neurosurgery
03 medical and health sciences
Journal Article
Humans
National Institute of Neurological Disorders and Stroke (U.S.)
Medical history
cardiovascular diseases
education
Exercise
Intramural
Data source
Subject characteristics
National Library of Medicine (U.S.)
business.industry
Intracranial Aneurysm
030208 emergency & critical care medicine
Subject Characteristics
Environmental Exposure
Subarachnoid Hemorrhage
medicine.disease
Intracranial aneurysm
Research Support
N.I.H.
Intramural
United States
ddc:616.8
Social Class
Family medicine
Participant
Neurology (clinical)
business
030217 neurology & neurosurgery
Zdroj: Neurocritical Care, 30, 20-27. Humana Press
Neurocritical Care, 30(Suppl 1), 20. Humana Press
Neurocritical Care, 30, 20-27
Neurocritical care, 30(1), 20-27. Humana Press
Neurocritical Care, Vol. 30, No Suppl 1 (2019) pp. 20-27
ISSN: 1541-6933
Popis: Background: The National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDEs) have been generated to standardize and define terms used by the scientific community. The widespread use of these CDEs promotes harmonized data collection in clinical research. The aim of the NINDS Unruptured Intracranial Aneurysms (UIA) and Subarachnoid Hemorrhage (SAH), and Subject Characteristics working group (WG) was to identify, define, and classify CDEs describing the characteristics of patients diagnosed with an UIA and SAH. Thus, “Participant/Subject characteristics” is a set of factors defining a population of selected individuals and allowing comparisons with a reference population and overtime. Methods: Based on standard terms defined by the United States’ Census Bureau, CDEs previously defined by several (Stroke, Epilepsy and Traumatic Brain Injury) NINDS CDE working groups literature and expert opinion of the WG, the “Participant/Subject characteristics” domain has been defined. Results: A set of 192 CDEs divided in 7 subsections: demographics (8 CDEs), social status (8 CDEs), behavioral status (22 CDEs), family and medical history (144 CDEs), pregnancy and perinatal history (8 CDEs), history data source reliability (3 CDEs), and prior functional status (3 CDEs) was defined. SAH is characterized by 6 core elements, all classified in the “Participant/Subject characteristics” domain. Four exploratory elements out of the 39 for SAH overall are in the “Participant/Subject characteristics” domain, and all remaining 182 CDEs in the “Participant/Subject characteristics” domain are classified as Supplemental-Highly Recommended elements. Conclusions: These CDEs would allow the development of best practice guidelines to standardize the assessment and reporting of observations concerning UIA and SAH.
Databáze: OpenAIRE
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