Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia

Autor: Dalibor Stanimirovic, Eva Murko, Tadej Battelino, Urh Groselj

Publikováno v: Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-13 (2019)

Abstract Background According to rough estimates, there are approximately 150,000 rare disease patients in Slovenia (out of a total population of 2 million). Despite the absence of accurate epidemiological data on their status, these figures reveal t

Externí odkaz: https://doaj.org/article/2393b54f96bb4343b17f6e5a8bbe550c

Analysis of the Key Factors for Successful Public Policy Implementation: A Qualitative Study in Slovenia

Autor: Lan Umek, Dalibor Stanimirovic, Žiga Kotnik, Polonca Kovač, Mirko Vintar

Publikováno v: Danube, Vol 11, Iss 2, Pp 113-140 (2020)

This paper analyses the role and significance of the selected factors for the successful design and implementation of public policies in Slovenia and more broadly. Based on structured interviews and content analysis of the responses, we investigated

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::4a3ef0ddbfd8211f8315d6bf858dfe83
https://doi.org/10.2478/danb-2020-0007

Towards a Comprehensive Strategy for the Management of Rare Diseases in Slovenia: Outlining an IT-Enabled Ecosystemic Approach

Autor: Dalibor Stanimirovic, Eva Murko, Tadej Battelino, Urh Groselj, Mojca Zerjav Tansek

Publikováno v: International Journal of Environmental Research and Public Health; Volume 18; Issue 23; Pages: 12395
International Journal of Environmental Research and Public Health, Vol 18, Iss 12395, p 12395 (2021)
International Journal of Environmental Research and Public Health

Rare diseases (RDs), with distinctive and complex features, pose a serious public health concern and represent a considerable challenge for the Slovenian healthcare system. One of the potential approaches to tackling this problem and treating patient

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::96d38a34e9a12785d98f8d0299f6e7a1

eHealth Patient Portal - Becoming an Indispensable Public Health Tool in the Time of Covid-19

Autor: Dalibor, Stanimirovic

Publikováno v: Studies in health technology and informatics. 281

Patient Portal represents a connecting service for the Slovenian eHealth solutions and enables patients with effective and secure access to their medical documentation. Ever since its national roll-out in 2017 the number of visits of the Patient Port

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=pmid________::0f7413e3c1c3eae8c2f577b53af667c7
https://pubmed.ncbi.nlm.nih.gov/34042800

Charting Early Developmental Trajectory of a Pilot Rare Disease Registry in Slovenia

Autor: Dalibor, Stanimirovic, Eva, Murko, Tadej, Battelino, Urh, Groselj

Publikováno v: Studies in health technology and informatics. 272

Active surveillance of rare diseases enables evidence-informed policymaking, wide-ranging monitoring of rare disease patients, and subsequently assists progressively complex clinical and research needs. This article charts the initial steps for the d

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=pmid________::02250ac2c80931d6d6983ce8107498db
https://pubmed.ncbi.nlm.nih.gov/32604639