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Common Data Elements for Unruptured Intracranial Aneurysm and Subarachnoid Hemorrhage Clinical Research: Recommendations from the Working Group on Long-Term Therapies.

Publication ,  Journal Article
Wong, GKC; Daly, JJ; Rhoney, DH; Broderick, J; Ogilvy, C; Roos, YB; Siddiqui, A; Torner, J ...
Published in: Neurocrit Care
June 2019

OBJECTIVES: The goal for the long-term therapies (LTT) working group (WG) of the Unruptured Intracranial Aneurysm (UIA) and Subarachnoid Hemorrhage (SAH) common data elements (CDEs) was to develop a comprehensive set of CDEs, data definitions, case report forms, and guidelines for use in UIA and SAH LTT clinical research, as part of a new joint effort between the National Institute of Neurological Disorders and Stroke (NINDS) and the National Library of Medicine of the US National Institutes of Health. These UIA and SAH CDEs will join other neurological disease-specific CDEs already developed and available for use by research investigators. METHODS: The eight LTT WG members comprised international UIA, and SAH experts reviewed existing NINDS CDEs and instruments, created new elements when needed, and provided recommendations for future LTT clinical research. The recommendations were compiled, internally reviewed by the all UIA and SAH WGs and steering committee members. The NINDS CDE team also reviewed the final version before posting the SAH Version 1.0 CDE recommendations on the NINDS CDE website. RESULTS: The NINDS UIA and SAH LTT CDEs and supporting documents are publicly available on the NINDS CDE ( https://www.commondataelements.ninds.nih.gov/#page=Default ) and NIH Repository ( https://cde.nlm.nih.gov/home ) websites. The subcommittee members discussed and reviewed various parameters, outcomes, and endpoints in UIA and SAH LTT studies. The following meetings with WG members, the LTT WG's recommendations are incorporated into the disease/injury-related events, assessments and examinations, and treatment/intervention data domains. CONCLUSIONS: Noting gaps in the literature regarding medication and rehabilitation parameters in UIA and SAH clinical studies, the current CDE recommendations aim to arouse interest to explore the impact of medication and rehabilitation treatments and therapies and encourage the convergence of LTT clinical study parameters to develop a harmonized standard.

Duke Scholars

Published In

Neurocrit Care

DOI

EISSN

1556-0961

Publication Date

June 2019

Volume

30

Issue

Suppl 1

Start / End Page

79 / 86

Location

United States

Related Subject Headings

  • United States
  • Subarachnoid Hemorrhage
  • Outcome and Process Assessment, Health Care
  • Neurology & Neurosurgery
  • National Library of Medicine (U.S.)
  • National Institute of Neurological Disorders and Stroke (U.S.)
  • Intracranial Aneurysm
  • Humans
  • Common Data Elements
  • Biomedical Research
 

Citation

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Wong, G. K. C., Daly, J. J., Rhoney, D. H., Broderick, J., Ogilvy, C., Roos, Y. B., … Unruptured Intracranial Aneurysm and SAH CDE Project Investigators, . (2019). Common Data Elements for Unruptured Intracranial Aneurysm and Subarachnoid Hemorrhage Clinical Research: Recommendations from the Working Group on Long-Term Therapies. Neurocrit Care, 30(Suppl 1), 79–86. https://doi.org/10.1007/s12028-019-00727-2
Wong, George K. C., Janis J. Daly, Denise H. Rhoney, Joseph Broderick, Christopher Ogilvy, Y. B. Roos, Adnan Siddiqui, James Torner, and James Unruptured Intracranial Aneurysm and SAH CDE Project Investigators. “Common Data Elements for Unruptured Intracranial Aneurysm and Subarachnoid Hemorrhage Clinical Research: Recommendations from the Working Group on Long-Term Therapies.Neurocrit Care 30, no. Suppl 1 (June 2019): 79–86. https://doi.org/10.1007/s12028-019-00727-2.
Wong GKC, Daly JJ, Rhoney DH, Broderick J, Ogilvy C, Roos YB, et al. Common Data Elements for Unruptured Intracranial Aneurysm and Subarachnoid Hemorrhage Clinical Research: Recommendations from the Working Group on Long-Term Therapies. Neurocrit Care. 2019 Jun;30(Suppl 1):79–86.
Wong, George K. C., et al. “Common Data Elements for Unruptured Intracranial Aneurysm and Subarachnoid Hemorrhage Clinical Research: Recommendations from the Working Group on Long-Term Therapies.Neurocrit Care, vol. 30, no. Suppl 1, June 2019, pp. 79–86. Pubmed, doi:10.1007/s12028-019-00727-2.
Wong GKC, Daly JJ, Rhoney DH, Broderick J, Ogilvy C, Roos YB, Siddiqui A, Torner J, Unruptured Intracranial Aneurysm and SAH CDE Project Investigators. Common Data Elements for Unruptured Intracranial Aneurysm and Subarachnoid Hemorrhage Clinical Research: Recommendations from the Working Group on Long-Term Therapies. Neurocrit Care. 2019 Jun;30(Suppl 1):79–86.
Journal cover image

Published In

Neurocrit Care

DOI

EISSN

1556-0961

Publication Date

June 2019

Volume

30

Issue

Suppl 1

Start / End Page

79 / 86

Location

United States

Related Subject Headings

  • United States
  • Subarachnoid Hemorrhage
  • Outcome and Process Assessment, Health Care
  • Neurology & Neurosurgery
  • National Library of Medicine (U.S.)
  • National Institute of Neurological Disorders and Stroke (U.S.)
  • Intracranial Aneurysm
  • Humans
  • Common Data Elements
  • Biomedical Research