Common Data Elements for Unruptured Intracranial Aneurysms and Aneurysmal Subarachnoid Hemorrhage: Recommendations from the Working Group on Hospital Course and Acute Therapies-Proposal of a Multidisciplinary Research Group

Airton Leonardo de Oliveira Manoel; Mathieu van der Jagt; Sepideh Amin-Hanjani; Nicholas C Bambakidis; Gretchen M Brophy; Ketan Bulsara; Jan Claassen; E Sander Connolly; S Alan Hoffer; Brian L Hoh; Robert G Holloway; Adam G Kelly; Stephan A Mayer; Peter Nakaji; Alejandro A Rabinstein; Peter Vajkoczy; Mervyn D I Vergouwen; Henry Woo; Gregory J Zipfel; Jose I Suarez; Unruptured Aneurysms and SAH − CDE Project Investigators

doi:10.1007/s12028-019-00726-3

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Common Data Elements for Unruptured Intracranial Aneurysms and Aneurysmal Subarachnoid Hemorrhage: Recommendations from the Working Group on Hospital Course and Acute Therapies-Proposal of a Multidisciplinary Research Group

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Common Data Elements for Unruptured Intracranial Aneurysms and Aneurysmal Subarachnoid Hemorrhage: Recommendations from the Working Group on Hospital Course and Acute Therapies-Proposal of a Multidisciplinary Research Group

Airton Leonardo de Oliveira Manoel, Mathieu van der Jagt, Sepideh Amin-Hanjani, Nicholas C Bambakidis, Gretchen M Brophy, Ketan Bulsara, Jan Claassen, E Sander Connolly, S Alan Hoffer, Brian L Hoh, …

Neurocritical care, Vol.30(Suppl 1), pp.36-45

06/2019

DOI: 10.1007/s12028-019-00726-3

PMID: 31119687

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https://pure.amsterdamumc.nl/files/156934913/Common-data-elements-for-unruptured-intracranial-aneurysms-and-aneurysmal-subarachnoid-hemorrhage-recommendations-from-.pdfView

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Abstract

The Common Data Elements (CDEs) initiative is a National Institute of Health/National Institute of Neurological Disorders and Stroke (NINDS) effort to standardize naming, definitions, data coding, and data collection for observational studies and clinical trials in major neurological disorders. A working group of experts was established to provide recommendations for Unruptured Aneurysms and Aneurysmal Subarachnoid Hemorrhage (SAH) CDEs. This paper summarizes the recommendations of the Hospital Course and Acute Therapies after SAH working group. Consensus recommendations were developed by assessment of previously published CDEs for traumatic brain injury, stroke, and epilepsy. Unruptured aneurysm- and SAH-specific CDEs were also developed. CDEs were categorized into "core", "supplemental-highly recommended", "supplemental" and "exploratory". We identified and developed CDEs for Hospital Course and Acute Therapies after SAH, which included: surgical and procedure interventions; rescue therapy for delayed cerebral ischemia (DCI); neurological complications (i.e. DCI; hydrocephalus; rebleeding; seizures); intensive care unit therapies; prior and concomitant medications; electroencephalography; invasive brain monitoring; medical complications (cardiac dysfunction; pulmonary edema); palliative comfort care and end of life issues; discharge status. The CDEs can be found at the NINDS Web site that provides standardized naming, and definitions for each element, and also case report form templates, based on the CDEs. Most of the recommended Hospital Course and Acute Therapies CDEs have been newly developed. Adherence to these recommendations should facilitate data collection and data sharing in SAH research, which could improve the comparison of results across observational studies, clinical trials, and meta-analyses of individual patient data.

United States

Palliative Care

Electroencephalography

Recurrence

Brain Ischemia

National Library of Medicine (U.S.)

Hydrocephalus

Subarachnoid Hemorrhage - therapy

Humans

Patient Discharge

Hospitalization

Neurosurgical Procedures

National Institute of Neurological Disorders and Stroke (U.S.)

Intracranial Aneurysm - therapy

Aneurysm, Ruptured - therapy

Biomedical Research

Terminal Care

Common Data Elements

Seizures

Details

Title: Subtitle: Common Data Elements for Unruptured Intracranial Aneurysms and Aneurysmal Subarachnoid Hemorrhage: Recommendations from the Working Group on Hospital Course and Acute Therapies-Proposal of a Multidisciplinary Research Group
Creators: Airton Leonardo de Oliveira Manoel - Adult Critical Care Unit, Department of Critical Care Medicine, Hospital Paulistano - UnitedHealth Group Brazil, Rua Martiniano de Carvalho, 741, Bela Vista, São Paulo, SP, 01321-001, Brazil. airtonleo.manoel@gmail.com
Mathieu van der Jagt - Department of Intensive Care Adults, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
Sepideh Amin-Hanjani - Department of Neurosurgery, University of Illinois at Chicago, Chicago, USA
Nicholas C Bambakidis - Department of Neurological Surgery, UH Cleveland Medical Center, Case Western Reserve University, Cleveland, OH, USA
Gretchen M Brophy - Department of Pharmacotherapy and Outcomes Science, School of Pharmacy, Richmond, VA, USA
Ketan Bulsara - Department of Neurosurgery, University of Connecticut, Farmington, CT, USA
Jan Claassen - Columbia University, New York, NY, USA
E Sander Connolly - Columbia University, New York, NY, USA
S Alan Hoffer - Department of Neurological Surgery, UH Cleveland Medical Center, Case Western Reserve University, Cleveland, OH, USA
Brian L Hoh - Department of Neurosurgery, University of Florida, Gainesville, FL, USA
Robert G Holloway - Department of Neurology, University of Rochester, Rochester, NY, USA
Adam G Kelly - Department of Neurology, University of Rochester, Rochester, NY, USA
Stephan A Mayer - Department of Neurology, Henry Ford Health System, Detroit, MI, USA
Peter Nakaji - Department of Neurosurgery, Barrow Neurological Institute, Phoenix, AZ, USA
Alejandro A Rabinstein - Department of Neurology, Mayo Clinic, Rochester, MN, USA
Peter Vajkoczy - Department of Neurosurgery, Charite Hospital, Universitatsmedizin, Berlin, Germany
Mervyn D I Vergouwen - Brain Center Rudolf Magnus, Department of Neurology and Neurosurgery, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
Henry Woo - Department of Neurosurgery and Radiology, Zucker School of Medicine at Hofstra/Northwell Health, New York, NY, USA
Gregory J Zipfel - Washington University in St Louis, St. Louis, MO, USA
Jose I Suarez - Departments of Anesthesiology and Critical Care Medicine, Neurology, and Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, USA
Unruptured Aneurysms and SAH − CDE Project Investigators
Contributors: Colin P Derdeyn (Contributor) - University of Iowa, Radiology
Resource Type: Journal article
Publication Details: Neurocritical care, Vol.30(Suppl 1), pp.36-45
DOI: 10.1007/s12028-019-00726-3
PMID: 31119687
NLM abbreviation: Neurocrit Care
ISSN: 1541-6933
eISSN: 1556-0961
Publisher: United States
Grant note: HHSN271201200034C / NINDS NIH HHS
Language: English
Date published: 06/2019
Academic Unit: Neurology; Radiology; Iowa Neuroscience Institute; Neurosurgery
Record Identifier: 9984070673102771

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