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

被引：15

作者：

Bijlenga, Philippe ^{[1
,27
]}

Morita, Akio ^{[2
,18
,26
]}

Ko, Nerissa U. ^{[3
]}

Mocco, J. ^{[4
]}

Morel, Sandrine ^{[1
]}

Murayama, Yuichi ^{[5
]}

Wermer, Marieke J. H. ^{[6
]}

Brown, Robert D.

Suarez, Jose I. ^{[8
,29
]}

Macdonald, R. Loch ^{[9
,35
]}

Amin-Hanjani, Sepideh ^{[10
,31
]}

Brown, Robert D., Jr. ^{[7
,11
,25
]}

Manoel, Airton Leonardo de Oliveira ^{[12
,32
]}

Derdeyn, Colin P. ^{[13
,36
]}

Etminan, Nima ^{[14
,37
,41
]}

Keller, Emanuela ^{[15
,34
]}

LeRoux, Peter D. ^{[16
]}

Mayer, Stephan ^{[17
,28
]}

Morita, Akio ^{[2
,18
,26
]}

Rinkel, Gabriel ^{[19
,42
]}

Rufennacht, Daniel ^{[20
]}

Stienen, Martin N. ^{[21
,44
]}

Torner, James ^{[22
,39
]}

Vergouwen, Mervyn D. I. ^{[23
,45
]}

Wong, George K. C. ^{[24
,40
]}

Bijlenga, Philippe ^{[1
,27
]}

Ko, Nerissa

McDougall, Cameron G.

Mocco, J. ^{[4
]}

Murayama, Yuuichi

Werner, Marieke J. H.

Suarez, Jose I. ^{[8
,29
]}

Damani, Rahul ^{[30
]}

Broderick, Joseph

Dhar, Raj

Jauch, Edward C.

Kirkpatrick, Peter J.

Martin, Renee H.

Mocco, J. ^{[4
]}

Muehlschlegel, Susanne

Mutoh, Tatsushi

Nyquist, Paul

Olson, Daiwai

Mejia-Mantilla, Jorge H.

Amin-Hanjani, Sepideh ^{[10
,31
]}

van der Jagt, Mathieu ^{[33
]}

Bambakidis, Nicholas

Brophy, Gretchen

Bulsara, Ketan

Claassen, Jan

机构：

[1] Univ Geneva, Fac Med, Dept Clin Neurosci, Neurosurg, Rue Gabrielle Perret Gentil 4, CH-1211 Geneva 14, Switzerland

[2] Nippon Med Sch, Dept Neurol Surg, Tokyo, Japan

[3] Univ Calif San Francisco, Dept Neurol, San Francisco, CA USA

[4] Mt Sinai Hlth Syst, Dept Neurosurg, New York, NY USA

[5] Jikei Univ, Sch Med, Dept Neurosurg, Minato Ku, Tokyo, Japan

[6] Leiden Univ, Med Ctr, Dept Neurol, Leiden, Netherlands

[7] Mayo Clin, Rochester, MN USA

[8] Johns Hopkins Univ, Sch Med, Baltimore, MD USA

[9] Univ Toronto, Toronto, ON, Canada

[10] Univ Illinois, Chicago, IL USA

[11] Mayo Clin, Rochester, MN USA

[12] Univ Toronto, Toronto, ON, Canada

[13] Univ Iowa, Carver Coll Med, Iowa City, IA USA

[14] Univ Hosp Mannheim, Mannheim, Germany

[15] Univ Zurich, Zurich, Switzerland

[16] Main Line Hlth, Wynnewood, PA USA

[17] Henry Ford Hosp, Detroit, MI 48202 USA

[18] Nippon Med Sch, Tokyo, Japan

[19] Univ Med Ctr, Utrecht, Netherlands

[20] Klin Hirslanden, Zurich, Switzerland

[21] Univ Zurich, Zurich, Switzerland

[22] Univ Iowa, Iowa City, IA USA

[23] Univ Med Ctr, Utrecht, Netherlands

[24] Chinese Univ Hong Kong, Shatin, Hong Kong, Peoples R China

[25] Mayo Clin, Rochester, MN USA

[26] Nippon Med Sch, Tokyo, Japan

[27] Geneva Univ Hosp, Geneva, Switzerland

[28] Henry Ford Hosp, Detroit, MI 48202 USA

[29] Johns Hopkins Univ, Sch Med, Baltimore, MD USA

[30] Baylor Coll Med, Houston, TX 77030 USA

[31] Univ Illinois, Chicago, IL USA

[32] Univ Toronto, Toronto, ON, Canada

[33] Erasmus MC, Rotterdam, Netherlands

[34] Univ Zurich, Zurich, Switzerland

[35] Univ Toronto, Toronto, ON, Canada

[36] Univ Iowa, Carver Coll Med, Iowa City, IA USA

[37] Univ Hosp Mannheim, Mannheim, Germany

[38] Univ Hosp Mannheim, Mannheim, Germany

[39] Univ Iowa, Iowa City, IA USA

[40] Chinese Univ Hong Kong, Shatin, Hong Kong, Peoples R China

[41] Univ Hosp Mannheim, Mannheim, Germany

[42] Univ Med Ctr, Utrecht, Netherlands

[43] Univ Hosp Mannheim, Mannheim, Germany

[44] Univ Zurich, Zurich, Switzerland

[45] Univ Med Ctr, Utrecht, Netherlands

[46] Natl Lib Med, Natl Informat Ctr Hlth Serv Res & Hlth Care Techn, Bethesda, MD USA

[47] Natl Lib Med, Bethesda, MD USA

[48] NINDS, Bldg 36,Rm 4D04, Bethesda, MD 20892 USA

[49] Emmes Corp, Rockville, MD USA

来源：

NEUROCRITICAL CARE | 2019年 / 30卷 / Suppl 1期

关键词：

Intracranial aneurysm; Subarachnoid Hemorrhage; Common Data Elements; Participant; Subject characteristics; MODIFIABLE RISK-FACTORS; CEREBRAL ANEURYSMS; ATTRIBUTABLE RISK; NATURAL-HISTORY; RUPTURE RISK; HYPERTENSION; PREDICTION; MORTALITY; SMOKING; DISEASE;

D O I：

10.1007/s12028-019-00724-5

中图分类号：

R4 [临床医学];

学科分类号：

1002 ; 100602 ;

摘要：

BackgroundThe 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.MethodsBased 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.ResultsA 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.ConclusionsThese CDEs would allow the development of best practice guidelines to standardize the assessment and reporting of observations concerning UIA and SAH.

引用

页码：20 / 27

页数：8

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