NARCOMS and Other Registries in Multiple Sclerosis: Issues and Insights

Ruth Ann Marrie; Gary R. Cutter; Robert J. Fox; Timothy Vollmer; Tuula Tyry; Amber Salter

doi:10.7224/1537-2073.2020-133

NARCOMS and Other Registries in Multiple Sclerosis: Issues and Insights

Ruth Ann Marrie, Gary R. Cutter, Robert J. Fox, Timothy Vollmer, Tuula Tyry, Amber Salter

Research output: Contribution to journal › Article › peer-review

11 Scopus citations

Abstract

Observational studies and registries can play a critical role in elucidating the natural and treated history of multiple sclerosis (MS) and identifying factors associated with outcomes such as disability and health-related quality of life. The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is one of multiple registries worldwide that focuses on people with MS, but one of the very few patient-driven MS registries. On the 25th anniversary of the first data collection for the NARCOMS Registry, we discuss the importance of disease registries in the MS field, describe key concepts related to registry design and management, and highlight findings from MS registries relevant to clinical care or health policy. Int J MS Care. 2021;23:276-284.

Original language	English (US)
Pages (from-to)	276-285
Number of pages	10
Journal	International Journal of MS Care
Volume	23
Issue number	6
DOIs	https://doi.org/10.7224/1537-2073.2020-133
State	Published - Nov 2021
Externally published	Yes

ASJC Scopus subject areas

Clinical Neurology
Advanced and Specialized Nursing

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10.7224/1537-2073.2020-133

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title = "NARCOMS and Other Registries in Multiple Sclerosis: Issues and Insights",

abstract = "Observational studies and registries can play a critical role in elucidating the natural and treated history of multiple sclerosis (MS) and identifying factors associated with outcomes such as disability and health-related quality of life. The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is one of multiple registries worldwide that focuses on people with MS, but one of the very few patient-driven MS registries. On the 25th anniversary of the first data collection for the NARCOMS Registry, we discuss the importance of disease registries in the MS field, describe key concepts related to registry design and management, and highlight findings from MS registries relevant to clinical care or health policy. Int J MS Care. 2021;23:276-284.",

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AU - Marrie, Ruth Ann

AU - Cutter, Gary R.

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AU - Vollmer, Timothy

AU - Tyry, Tuula

AU - Salter, Amber

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AB - Observational studies and registries can play a critical role in elucidating the natural and treated history of multiple sclerosis (MS) and identifying factors associated with outcomes such as disability and health-related quality of life. The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is one of multiple registries worldwide that focuses on people with MS, but one of the very few patient-driven MS registries. On the 25th anniversary of the first data collection for the NARCOMS Registry, we discuss the importance of disease registries in the MS field, describe key concepts related to registry design and management, and highlight findings from MS registries relevant to clinical care or health policy. Int J MS Care. 2021;23:276-284.

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NARCOMS and Other Registries in Multiple Sclerosis: Issues and Insights

Abstract

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