Sherita Alai

Cure Sickle Cell Initiative recommendations on common data elements for sickle cell disease gene therapy trials

Sophie Lanzkron, Victoria H Coleman-Cowger, Alexis A. Thompson, C. Patrick Carroll et autres

ABSTRACT: The Cure Sickle Cell Initiative (CureSCi), created by the National Heart, Lung, and Blood Institute, has developed data standards to increase interoperability and meta-analysis of studies specifically investigating gene therapy for sickle cell disease (SCD). The aims of the CureSCi Common …

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Correction to: Definition and Prioritization of Data Elements for Cohort Studies and Clinical Trials on Patients with Unruptured Intracranial Aneurysms: Proposal of a Multidisciplinary Research Group

Ale Algra, Rustam Al‐Shahi Salman, Juhana Frösén, David Hasan et autres

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Definition and Prioritization of Data Elements for Cohort Studies and Clinical Trials on Patients with Unruptured Intracranial Aneurysms: Proposal of a Multidisciplinary Research Group

Ale Algra, Rustam Al‐Shahi Salman, Juhana Frösén, David Hasan et autres

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Development of Common Data Elements for Use in Chiari Malformation Type I Clinical Research: An NIH/NINDS Project

Mark G. Luciano, Ulrich Batzdorf, Roger W. Kula, Brandon G. Rocque et autres

The management of Chiari I malformation (CMI) is controversial because treatment methods vary and treatment decisions rest on incomplete understanding of its complex symptom patterns, etiologies, and natural history. Validity of studies that attempt to compare treatment of CMI has been limited …

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Harmonizing Data Sharing: NIH/NINDS and DOD Sport-Related Concussion Common Data Elements (CDE) Recommendations

Anthony P. Kontos, Elisabeth A. Wilde, Harvey S. Levin, Joy Esterlitz et autres

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NIH/NINDS and DoD CDE Recommendations: Biomechanical Devices in Head Impact and Blast Exposure Dynamics

Adam Bartsch, Carol Taylor‐Burds, David B. Camarillo, Joy Esterlitz et autres

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National Institute of Neurological Disorders and Stroke and Department of Defense Sport-Related Concussion Common Data Elements Version 1.0 Recommendations

Steven P. Broglio, Anthony P. Kontos, Harvey S. Levin, Kathryn Schneider et autres

Through a partnership with the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health, and Department of Defense, the development of Sport-Related Concussion (SRC) Common Data Elements (CDEs) was initiated. The aim of this collaboration was to increase the …

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Ninds/nih And Dod Sport-related Concussion Common Data Elements

Anthony P. Kontos, Steven P. Broglio, Kathryn Schneider, Elisabeth A. Wilde et autres

PURPOSE: In 2016, the National Institute of Neurological Disorders and Stroke (NINDS)/National Institutes of Health (NIH) and the Department of Defense (DOD) began development of Sport-related Concussion (SRC) Common Data Elements (CDEs) to develop data standards for all funded clinical research in …

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A Common Language for Clinical Research Studies: The National Institute of Neurological Disorders and Stroke (NINDS) and Centers for Disease Control and Prevention (CDC) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Common Data Elements (CDEs) (P2.016)

Robin Feldman, Katelyn Gay, Sherita Alai, Joy Esterlitz et autres

Through a collaboration between the NINDS, National Institutes of Health (NIH), and the CDC, Version 1.0 of CDE recommendations are being developed for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The goals of this project are to increase the efficiency and effectiveness of clinical …

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Common Data Elements (CDEs) for Biomechanical Devices used in Blunt Head Impact and Blast Exposure Dynamics: The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH) and Department of Defense (DOD) Version 1.0 Recommendations (P2.012)

Kristen Joseph, Katelyn Gay, Adam Bartsch, David B. Camarillo et autres

NINDS/NIH and DOD collaborated to develop version 1.0 CDE recommendations for Biomechanical Devices used in Blunt Head Impact and Blast Exposure Dynamics. The goals of this project are to facilitate research by providing a framework for data collection using standardized formats with …

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Streamlining Clinical Research in Sports-Related Concussion: The National Institute of Neurological Disorders and Stroke (NINDS)/National Institutes of Health (NIH), and Department of Defense (DOD) Sport-Related Concussion Common Data Elements (CDEs) (P2.014)

Kristen Joseph, Sherita Alai, Joy Esterlitz, Katelyn Gay et autres

In a collaborative effort with the NINDS/NIH and DOD, version 1.0 of the Sport- Related Concussion (SRC) CDEs were released in June 2017 to increase the efficiency and effectiveness of related clinical research studies by minimizing study start-up time, improving data quality, …

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Accelerating Headache Clinical Research Studies: The National Institute of Neurological Disorders and Stroke (NINDS) Headache Version 2.0 (V2.0) Common Data Elements (CDEs) (P3.100)

Sarah Tanveer, Sherita Alai, Joy Esterlitz, Michael L. Oshinsky

Headache V2.0 CDE recommendations were updated to reflect advancements in the field of headache and migraine. The Headache CDEs are intended to increase efficiency and effectiveness of headache and migraine clinical research studies, improve data quality, promote data sharing and aggregation of …

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