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Osler-Weber-Rendu disease (HHT-WG)
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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.

The Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) has developed and implemented outcome measures to maximise the number of patients receiving good care.

Have a look at the HHT Outcome Measures below.

Result (1)
European Reference Network For Rare Vascular Diseases (VASCERN) Outcome Measures For Hereditary Haemorrhagic Telangiectasia (HHT)
August 15 2018

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.

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