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2012 Spinal  Muscular  Atrophy

2017 Limb-­‐Girdle  Muscular  Distrophy

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RESEARCH ARTICLE Open Access

Perspectives on neurological patient registries:a literature review and focus group studyLawrence Korngut1*, Gail MacKean2, Lisa Casselman3, Megan Johnston1, Lundy Day6, Darren Lam5,Diane Lorenzetti4, Janet Warner1, Nathalie Jetté5 and Tamara Pringsheim6,7

Abstract

Background: Patient registries represent a well-established methodology for prospective data collection with awide array of applications for clinical research and health care administration. An examination and synthesis of regis-try stakeholder perspectives has not been previously reported in the literature.

Methods: To inform the development of future neurological registries we examined stakeholder perspectives aboutsuch registries through a literature review followed by 3 focus groups comprised of a total of 15 neurologicalpatients and 12 caregivers.

Results: (1) Literature review: We identified 6,435 abstracts after duplicates were removed. Of these, 410 articlesunderwent full text review with 24 deemed relevant to perspectives about neurological and non-neurological regis-tries and were included in the final synthesis. From a patient perspective the literature supports altruism, responsibleuse of data and advancement of research, among others, as motivating factors for participating in a patient registry.Barriers to participation included concerns about privacy and participant burden (i.e. extra clinic visits and associatedcosts). (2) Focus groups: The focus groups identified factors that would encourage participation such as: having aclear purpose; low participant burden; and being well-managed among others.

Conclusions: We report the first examination and synthesis of stakeholder perspectives on registries broadly with aspecific focus on neurological patient registries. The findings of the broad literature review were congruent with theneurological patient and caregiver focus groups. We report common themes across the literature and the focusgroups performed. Stakeholder perspectives need to be considered when designing and operating patientregistries. Emphasizing factors that promote participation and mitigating barriers may enhance patient recruitment.

Keywords: Patient registries, Perspectives, Neurology, Focus group, Review

BackgroundPatient registries represent a well established method-ology for prospective data collection with a wide arrayof applications for clinical research and health care ad-ministration [1]. In contrast to randomized controlledclinical trials, patient registry data is often highlygeneralizable to the source patient population and pro-vides a complimentary mechanism to derive evidencefor clinical decision-making and management [2].Some neurological conditions are sufficiently uncom-mon or rare that single centre observational studies

and randomized controlled clinical trials are unfeasibleand thus are good candidates for studies through pa-tient registries. Data sources for patient registriesrange from clinic-based through administrative datacollection and often there is capture of patient demo-graphic and/or medical data. As part of the PublicHealth Agency of Canada’s National Population HealthStudy of Neurological Conditions, we undertook thedevelopment of Neurological Registry Best PracticeGuidelines for Canadian registries [3]. A key aspect ofsuccessful guideline development is the incorporationof various stakeholder perspectives to ensure relevanceand feasibility. We examined perspectives about regis-tries through a literature review. We subsequently per-formed neurological patient and caregiver focus groups

* Correspondence: korngut@gmail.com1Department of Clinical Neurosciences and Hotchkiss Brain Institute,University of Calgary, Clinical Neurosciences, South Health Campus, 4448Front Street SE, Calgary, Alberta T3M 1M4, CanadaFull list of author information is available at the end of the article

© 2013 Korngut et al.; licensee BioMed Central Ltd. This is an open access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.

Korngut et al. BMC Medical Research Methodology 2013, 13:135http://www.biomedcentral.com/1471-2288/13/135

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