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10.3390/ijerph17238743 http://scihub22266oqcxt.onion/10.3390/ijerph17238743 33255540!7727867!33255540     free     free     free Warning: file_get_contents(https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&id=33255540&cmd=llinks): Failed to open stream: HTTP request failed! HTTP/1.1 429 Too Many Requests in C:\Inetpub\vhosts\kidney.de\httpdocs\pget.php on line 215       Int+J+Environ+Res+Public+Health 2020 ; 17 (23): ? Nephropedia Template TP {{tp|p=33255540|t=2020. The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes |pdf=|usr=}}{{33255540}} gab.com Text The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes JO: Int J Environ Res Public Health http://www.kidney.de/pget.php?&tw=1&pmid=33255540 #FOAvip Rare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other members of the multidisciplinary team. RD registries enable data sharing and promotion of research and audits, often in an international setting, with the overall aim of improving patient care. RD registries also have a fundamental role in supporting the work of clinical networks such as the European Reference Networks (ERNs) for rare diseases. With the recent expansion of RD registries, it has become even more essential to outline standards of good practice in relation to governance, infrastructure, documentation, training, audits and adopting the Findable, Accessible, Interoperable and Reusable (FAIR) data principles to maintain registries of high quality. For the purpose of this paper, we highlight vital aspects of data access and data governance policies for RD registries, using the European Registries for Rare Endocrine Conditions (EuRRECa) as an example of a project that aims to promote good standards of practice for improving the quality of utilization of RD registries. Twit Text FOAVip The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes ????Int J Environ Res Public Health http://www.kidney.de/pget.php?&tw=1&pmid=33255540 #FOAvip Twit Text # Free Paper on # # # # # LINK http://www.kidney.de/pget.php?&tw=1&pmid=33255540 #FOAvip English Wikipedia <ref>{{Cite pmid|33255540}}</ref> The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes #MMPMID33255540 Ali SR; Bryce J; Tan LE; Hiort O; Pereira AM; van den Akker ELT; Appelman-Dijkstra NM; Bertherat J; Cools M; Dekkers OM; Kodra Y; Persani L; Smyth A; Smythe C; Taruscio D; Ahmed SF Int J Environ Res Public Health 2020[Nov]; 17 (23): ? PMID33255540show ga Rare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other members of the multidisciplinary team. RD registries enable data sharing and promotion of research and audits, often in an international setting, with the overall aim of improving patient care. RD registries also have a fundamental role in supporting the work of clinical networks such as the European Reference Networks (ERNs) for rare diseases. With the recent expansion of RD registries, it has become even more essential to outline standards of good practice in relation to governance, infrastructure, documentation, training, audits and adopting the Findable, Accessible, Interoperable and Reusable (FAIR) data principles to maintain registries of high quality. For the purpose of this paper, we highlight vital aspects of data access and data governance policies for RD registries, using the European Registries for Rare Endocrine Conditions (EuRRECa) as an example of a project that aims to promote good standards of practice for improving the quality of utilization of RD registries. |*Policy[MESH] |*Rare Diseases/epidemiology[MESH] |*Registries/standards[MESH] |Europe/epidemiology[MESH] |European Union/statistics & numerical data[MESH] |Humans[MESH]The EuRRECa Project as a Model for Data Access and Governance Policies(epmc).pdf DeepDyve Pubget Overpricing