Article type
Abstract
Background: RDs are a public health problem and a challenge for health systems. The lack of a standard definition of RDs, and their low and variable prevalence between countries are barriers to achieving strong and good-quality evidence. The scarcity of robust evidence prevents RDs from being adequately diagnosed and treated within the recommended one-year time frame. Collaborative work is essential to obtain reliable evidence and wider dissemination to reach healthcare professionals and policymakers. SDI services have been shown to have a positive effect on increasing the use of evidence in Public Health policies.
Objectives: Improve the dissemination of good-quality evidence in RDs among healthcare professionals and policymakers within the SAS.
Methods: The SDI service disseminates systematic reviews, clinical practice guidelines, evidence-based recommendations, position papers and clinical trials related to 22 RDs. The list of RDs was extracted from the report published by the Spanish Register of Rare Diseases (REER) in 2021. Three staff profiles are in charge of all tasks: an information specialist, a management consultant and a chief research officer.
Search strategies were developed and alerts were set up for each RD for the bibliographic databases Medline(Ovid), Embase(Elsevier), Scopus, Web of Science (WoS) and several specific resources in rare diseases such as Orphanet, Genereviews, NORD and IRDiRC. References and selection decisions are saved utilising Endnote libraries for each RD.
The SDI message includes contextual information, references and links to the article, and a translated abstract. The dissemination is carried out via electronic mail and an X (Twitter) account. The service started with 727 users covering 71 biomedical specialties.
Results: The service has disseminated 46 references, an average of 0,88 SDI messages per week. The specialities with the highest number of targeted DSIs have been pediatrics (61%), neuroscience (56%) and neurology (56%). The number of users has increased by almost nine per cent over the last year, reaching a total of 795 users (11% directors). Two new RDs have been added to the initial list.
Funding sources: European Reference Network: ERN-Guidelines programme. Tender Nº SANTE/2018/B3/030 and the Ministry of Health and Consumption of the Andalusian Regional Government.
Objectives: Improve the dissemination of good-quality evidence in RDs among healthcare professionals and policymakers within the SAS.
Methods: The SDI service disseminates systematic reviews, clinical practice guidelines, evidence-based recommendations, position papers and clinical trials related to 22 RDs. The list of RDs was extracted from the report published by the Spanish Register of Rare Diseases (REER) in 2021. Three staff profiles are in charge of all tasks: an information specialist, a management consultant and a chief research officer.
Search strategies were developed and alerts were set up for each RD for the bibliographic databases Medline(Ovid), Embase(Elsevier), Scopus, Web of Science (WoS) and several specific resources in rare diseases such as Orphanet, Genereviews, NORD and IRDiRC. References and selection decisions are saved utilising Endnote libraries for each RD.
The SDI message includes contextual information, references and links to the article, and a translated abstract. The dissemination is carried out via electronic mail and an X (Twitter) account. The service started with 727 users covering 71 biomedical specialties.
Results: The service has disseminated 46 references, an average of 0,88 SDI messages per week. The specialities with the highest number of targeted DSIs have been pediatrics (61%), neuroscience (56%) and neurology (56%). The number of users has increased by almost nine per cent over the last year, reaching a total of 795 users (11% directors). Two new RDs have been added to the initial list.
Funding sources: European Reference Network: ERN-Guidelines programme. Tender Nº SANTE/2018/B3/030 and the Ministry of Health and Consumption of the Andalusian Regional Government.