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Clinical Decision Support Tools

Outcome Measures

Clinical outcome measures are tools used to assess the impact of healthcare interventions on patients’ health and well-being. These measures help healthcare professionals to quantify changes in patients’ symptoms, function, and quality of life over time. It provides metrics to identify healthcare providers who provide good care for a specific rare disease and provide others with a set of goals to strive for.

Our Action Plan includes the development of outcome measures through the work package on outcome measures and clinical recommendations/expert consensus statement.

Results (2)

Patient-centered Quality Outcome Measures of Heritable Thoracic Aortic Disease Care
September 08 2023

European Reference Network For Rare Vascular Diseases (VASCERN) Outcome Measures For Hereditary Haemorrhagic Telangiectasia (HHT)
March 13 2023

Shovlin CL, Buscarini E, Kjeldsen AD, Mager HJ, Sabba C, Droege F, Geisthoff U, Ugolini S, Dupuis-Girod S. Haematologica. 2019 Feb;104(2):e85-e86. doi: 10.3324/haematol.2018.209791.

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