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

Philippe Bijlenga¹, Akio Morita², Nerissa U Ko³, J Mocco⁴, Sandrine Morel⁵, Yuichi Murayama⁶, Marieke J H Wermer⁷, Robert D Brown Jr⁸; Unruptured Cerebral Aneurysms and SAH CDE Project Investigators

Collaborators, Affiliations

Collaborators

Unruptured Cerebral Aneurysms and SAH CDE Project Investigators:
Jose I Suarez, R Loch Macdonald, Sepideh Amin-Hanjani, Robert D Brown Jr, Airton Leonardo de Oliveira Manoel, Colin P Derdeyn, Nima Etminan, Emanuela Keller, Peter D LeRoux, Stephan Mayer, Akio Morita, Gabriel Rinkel, Daniel Rufennacht, Martin N Stienen, James Torner, Mervyn D I Vergouwen, George K C Wong, Philippe Bijlenga, Nerissa Ko, Cameron G McDougall, J Mocco, Yuuichi Murayama, Marieke J H Werner, Rahul Damani, Joseph Broderick, Raj Dhar, Edward C Jauch, Peter J Kirkpatrick, Renee H Martin, Susanne Muehlschlegel, Tatsushi Mutoh, Paul Nyquist, Daiwai Olson, Jorge H Mejia-Mantilla, Mathieu van der Jagt, Nicholas Bambakidis, Ketan Bulsara, Jan Claassen, E Sander Connolly, S Alan Hoffer, Brian L Hoh, Robert G Holloway, Adam Kelly, Peter Nakaji, Alejandro Rabinstein, Peter Vajkoczy, Henry Woo, Gregory J Zipfel, Sherry Chou, Sylvain Doré, Aaron S Dumont, Murat Gunel, Hidetoshi Kasuya, Alexander Roederer, Ynte Ruigrok, Paul M Vespa, Asita Simone Sarrafzadeh-Khorrasani, Katharina Hackenberg, John Huston 3rd, Timo Krings, Giuseppe Lanzino, Philip M Meyers, Max Wintermark, Janis Daly, Christopher Ogilvy, Denise H Rhoney, Y B Roos, Adnan Siddiqui, Ale Algra, Juhanna Frösen, David Hasan, Seppo Juvela, David J Langer, Rustam Al-Shahi Salman, Daniel Hanggi, Liz Amos, Christophe Ludet, Claudia Moy, Joanne Odenkirchen, Sherita Ala'i, Joy Esterlitz, Kristen Joseph, Muniza Sheikh

Affiliations

¹ Neurosurgery, Department of Clinical Neurosciences, Faculty of Medicine, Geneva University, Rue Gabrielle-Perret-Gentil 4, 1211, Geneva 14, Switzerland. philippe.bijlenga@hcuge.ch.
² Department of Neurological Surgery, Nippon Medical School, Tokyo, Japan.
³ Department of Neurology, University of California, San Francisco, San Francisco, CA, USA.
⁴ Department of Neurosurgery, Mount Sinai Health System, New York, NY, USA.
⁵ Neurosurgery, Department of Clinical Neurosciences, Faculty of Medicine, Geneva University, Rue Gabrielle-Perret-Gentil 4, 1211, Geneva 14, Switzerland.
⁶ Department of Neurosurgery, The Jikei University School of Medicine, Minato, Tokyo, Japan.
⁷ Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.
⁸ Mayo Clinic, Rochester, MN, USA.

PMID: 31077079
DOI: 10.1007/s12028-019-00724-5

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

Philippe Bijlenga et al. Neurocrit Care. 2019 Jun.

. 2019 Jun;30(Suppl 1):20-27.

doi: 10.1007/s12028-019-00724-5.

Authors

Collaborators

Unruptured Cerebral Aneurysms and SAH CDE Project Investigators:
Jose I Suarez, R Loch Macdonald, Sepideh Amin-Hanjani, Robert D Brown Jr, Airton Leonardo de Oliveira Manoel, Colin P Derdeyn, Nima Etminan, Emanuela Keller, Peter D LeRoux, Stephan Mayer, Akio Morita, Gabriel Rinkel, Daniel Rufennacht, Martin N Stienen, James Torner, Mervyn D I Vergouwen, George K C Wong, Philippe Bijlenga, Nerissa Ko, Cameron G McDougall, J Mocco, Yuuichi Murayama, Marieke J H Werner, Rahul Damani, Joseph Broderick, Raj Dhar, Edward C Jauch, Peter J Kirkpatrick, Renee H Martin, Susanne Muehlschlegel, Tatsushi Mutoh, Paul Nyquist, Daiwai Olson, Jorge H Mejia-Mantilla, Mathieu van der Jagt, Nicholas Bambakidis, Ketan Bulsara, Jan Claassen, E Sander Connolly, S Alan Hoffer, Brian L Hoh, Robert G Holloway, Adam Kelly, Peter Nakaji, Alejandro Rabinstein, Peter Vajkoczy, Henry Woo, Gregory J Zipfel, Sherry Chou, Sylvain Doré, Aaron S Dumont, Murat Gunel, Hidetoshi Kasuya, Alexander Roederer, Ynte Ruigrok, Paul M Vespa, Asita Simone Sarrafzadeh-Khorrasani, Katharina Hackenberg, John Huston 3rd, Timo Krings, Giuseppe Lanzino, Philip M Meyers, Max Wintermark, Janis Daly, Christopher Ogilvy, Denise H Rhoney, Y B Roos, Adnan Siddiqui, Ale Algra, Juhanna Frösen, David Hasan, Seppo Juvela, David J Langer, Rustam Al-Shahi Salman, Daniel Hanggi, Liz Amos, Christophe Ludet, Claudia Moy, Joanne Odenkirchen, Sherita Ala'i, Joy Esterlitz, Kristen Joseph, Muniza Sheikh

Affiliations

¹ Neurosurgery, Department of Clinical Neurosciences, Faculty of Medicine, Geneva University, Rue Gabrielle-Perret-Gentil 4, 1211, Geneva 14, Switzerland. philippe.bijlenga@hcuge.ch.
² Department of Neurological Surgery, Nippon Medical School, Tokyo, Japan.
³ Department of Neurology, University of California, San Francisco, San Francisco, CA, USA.
⁴ Department of Neurosurgery, Mount Sinai Health System, New York, NY, USA.
⁵ Neurosurgery, Department of Clinical Neurosciences, Faculty of Medicine, Geneva University, Rue Gabrielle-Perret-Gentil 4, 1211, Geneva 14, Switzerland.
⁶ Department of Neurosurgery, The Jikei University School of Medicine, Minato, Tokyo, Japan.
⁷ Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.
⁸ Mayo Clinic, Rochester, MN, USA.

PMID: 31077079
DOI: 10.1007/s12028-019-00724-5

Abstract

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.

Keywords: Common Data Elements; Intracranial aneurysm; Participant/Subject characteristics; Subarachnoid Hemorrhage.

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References

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1. Rabinstein AA. Subarachnoid hemorrhage. Neurology. 2013;80(5):e56–9. - DOI
1. Damani R, Mayer S, Dhar R, Martin RH, Nyquist P, Olson DM, et al. Common data element for unruptured intracranial aneurysm and subarachnoid hemorrhage: recommendations from assessments and clinical examination workgroup/subcommittee. Neurocrit Care. 2019. https://doi.org/10.1007/s12028-019-00736-1 . - DOI - PubMed
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Common Data Elements for Subarachnoid Hemorrhage and Unruptured Intracranial Aneurysms: Recommendations from the Working Group on Subject Characteristics

Collaborators

Affiliations

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

Authors

Collaborators

Affiliations

Abstract

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical