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.
This Common & Clinical Outcomes Dataset: Adults and Children provides a standardised approach to evaluating patients with paediatric and primary lymphoedema (PPL). Developed by the VASCERN Paediatric and Primary Lymphoedema Working Group (PPL-WG), it supports harmonised data collection across clinical centres and is aligned with the FAIR Registry. The dataset includes core clinical measures such as limb volume, infection history, treatment types, and validated quality of life assessments for both children and adults.
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.