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.
Shovlin CL, Buscarini E, Kjeldsen AD, Mager HJ, Sabba C, Droege F, Geisthoff U, Ugolini S, Dupuis-Girod S. European Reference Network For Rare Vascular Diseases (VASCERN) Outcome Measures For Hereditary Haemorrhagic Telangiectasia (HHT). Orphanet J Rare Dis. 2018 Aug 15;13(1):136. doi: 10.1186/s13023-018-0850-2. PMID: 30111344; PMCID: PMC6094583.