The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry

Rare disease (RD) registries aim to promote data collection and sharing, and facilitate multidisciplinary collaboration with the overall aim of improving patient care. Recommendations relating to the minimum standards necessary to develop and maintain high quality registries are essential to ensure...

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Autores principales:	Salma Rashid Ali, Jillian Bryce, Yllka Kodra, Domenica Taruscio, Luca Persani, Syed Faisal Ahmed
Formato:	article
Lenguaje:	EN
Publicado:	MDPI AG 2021
Materias:	registries databases quality rare diseases rare conditions Medicine R
Acceso en línea:	https://doaj.org/article/148e8942e6814e4f800464545445c89d
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spelling	oai:doaj.org-article:148e8942e6814e4f800464545445c89d2021-11-25T17:49:53ZThe Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry10.3390/ijerph1822119681660-46011661-7827https://doaj.org/article/148e8942e6814e4f800464545445c89d2021-11-01T00:00:00Zhttps://www.mdpi.com/1660-4601/18/22/11968https://doaj.org/toc/1661-7827https://doaj.org/toc/1660-4601Rare disease (RD) registries aim to promote data collection and sharing, and facilitate multidisciplinary collaboration with the overall aim of improving patient care. Recommendations relating to the minimum standards necessary to develop and maintain high quality registries are essential to ensure high quality data and sustainability of registries. The aim of this international study was to survey RD registry leaders to ascertain the level of consensus amongst the RD community regarding the quality criteria that should be considered essential features of a disease registry. Of 35 respondents representing 40 RD registries, over 95% indicated that essential quality criteria should include establishment of a good governance system (ethics approval, registry management team, standard operating protocol and long-term sustainability plan), data quality (personnel responsible for data entry and procedures for checking data quality) and construction of an IT infrastructure complying with Findable, Accessible, Interoperable and Reusable (FAIR) principles to maintain registries of high quality, with procedures for authorized user access, erasing personal data, data breach procedures and a web interface. Of the 22 registries that performed a self-assessment, over 80% stated that their registry had a leader, project management group, steering committee, active funding stream, website, and user access policies. This survey has acceptability amongst the RD community for the self-quality evaluation of RD registries with high levels of consensus for the proposed quality criteria.Salma Rashid AliJillian BryceYllka KodraDomenica TaruscioLuca PersaniSyed Faisal AhmedMDPI AGarticleregistriesdatabasesqualityrare diseasesrare conditionsMedicineRENInternational Journal of Environmental Research and Public Health, Vol 18, Iss 11968, p 11968 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	registries databases quality rare diseases rare conditions Medicine R
spellingShingle	registries databases quality rare diseases rare conditions Medicine R Salma Rashid Ali Jillian Bryce Yllka Kodra Domenica Taruscio Luca Persani Syed Faisal Ahmed The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry
description	Rare disease (RD) registries aim to promote data collection and sharing, and facilitate multidisciplinary collaboration with the overall aim of improving patient care. Recommendations relating to the minimum standards necessary to develop and maintain high quality registries are essential to ensure high quality data and sustainability of registries. The aim of this international study was to survey RD registry leaders to ascertain the level of consensus amongst the RD community regarding the quality criteria that should be considered essential features of a disease registry. Of 35 respondents representing 40 RD registries, over 95% indicated that essential quality criteria should include establishment of a good governance system (ethics approval, registry management team, standard operating protocol and long-term sustainability plan), data quality (personnel responsible for data entry and procedures for checking data quality) and construction of an IT infrastructure complying with Findable, Accessible, Interoperable and Reusable (FAIR) principles to maintain registries of high quality, with procedures for authorized user access, erasing personal data, data breach procedures and a web interface. Of the 22 registries that performed a self-assessment, over 80% stated that their registry had a leader, project management group, steering committee, active funding stream, website, and user access policies. This survey has acceptability amongst the RD community for the self-quality evaluation of RD registries with high levels of consensus for the proposed quality criteria.
format	article
author	Salma Rashid Ali Jillian Bryce Yllka Kodra Domenica Taruscio Luca Persani Syed Faisal Ahmed
author_facet	Salma Rashid Ali Jillian Bryce Yllka Kodra Domenica Taruscio Luca Persani Syed Faisal Ahmed
author_sort	Salma Rashid Ali
title	The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry
title_short	The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry
title_full	The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry
title_fullStr	The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry
title_full_unstemmed	The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry
title_sort	quality evaluation of rare disease registries—an assessment of the essential features of a disease registry
publisher	MDPI AG
publishDate	2021
url	https://doaj.org/article/148e8942e6814e4f800464545445c89d
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The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry

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