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Sexually transmitted infections in Belgian general practices: a nationwide continuing surveillance study, data from 2015 to 2020
No full textDiverse roles of Primary Health Care in COVID-19 vaccination across 28 European countries – Insights from the Eurodata study
No full textClinicians' perspectives on routine screening for intimate partner violence in pregnant patients during antenatal care: a research protocol from the EGPRN Fellows
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A systematic review of studies that estimated the burden of chronic non-communicable rare diseases using disability-adjusted life years
No full textBackground
Initiatives aiming to assess the impact of rare diseases on population health might be hampered due to the complexity of disability-adjusted life years (DALYs) estimation. This study aimed to give insight into the epidemiological data sources and methodological approaches used in studies that estimated DALYs for chronic non-communicable rare diseases (CNCRD), and compare its results.
Methods
A literature strategy was developed for peer-review search in Embase and Medline, and also performed on grey literature databases and population health and/or rare disease-focused websites. We included studies that determined the burden of CNCRD listed on the Orphanet’s and/or the Genetic and Rare Diseases information center (GARD) websites. We excluded communicable and occupational diseases, rare cancers, and cost-effectiveness/benefit studies. Two researchers independently screened the identified records and extracted data from the final included studies. We used the Guidelines for Accurate and Transparent Health Estimates Reporting (GATHER) statement to assess the quality of reporting of the included studies. The data synthesis depicted the studies’ characteristics, their distribution by geographic coverage and the group of disease(s) they focused on, the methods and data input sources used and estimated DALY per case.
Results
In total, 533 titles were screened, and 18 studies were included. These studies covered 19 different CNCRDs, of which most fell in the disease category “Diseases of the nervous system”. Diverse methodological approaches and data input sources were observed among burden of CNCRD studies. A wide range of DALY per case was observed across the different studies and diseases included.
Conclusions
A low number of burden of CNCRD studies was observed and most estimates resulted from multi-country studies, underlining the importance of international cooperation to further CNCRD research. This study revealed a lack of epidemiological data and harmonization of methods which hampers comparisons across burden of CNCRD studies.</p
Inorganic Migrants Released from New Alternatives for Plastic Food Contact Materials: a Reason for Concern
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Experimental accumulation and depuration kinetics and natural occurrence of microcystin-LR in basil (Ocimum basilicum L.)
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