Clinical Outcome Measures
Clinical outcome measures provide metrics to identify healthcare providers of good care for a certain rare disease and give others a set of measures that they can work towards.
The production of outcome measures are a part of our Action Plan through the work package on outcome measures and clinical recommendations/expert consensus statement.
The HHT-WG published Outcome Measures For the Hereditary Haemorrhagic Telangiectasia (HHT) in the Orphanet Journal of Rare Diseases (OJRD).
This Clinical Position Statement is based on the 5 Outcome Measures selected by members of the VASCERN HHT-WG.
“Outcome Measures were developed and implemented by the HHT Working Group of the European Reference Network for Rare Vascular Diseases (VASCERN), in order to maximise the number of patients receiving good care. The measures specifically target areas where optimal management reduces morbidity and mortality in HHT patients, and were designed to be robust to emerging new evidence. Thresholds are the percentage of patients in particular settings who have been recommended screening, or provided with written advice. The 5 Outcome Measures cover (1) pulmonary AVM screening; (2) written nosebleed advice, (3) assessment of iron deficiency; (4) antibiotic prophylaxis prior to dental and surgical procedures for patients with pulmonary AVMs, and (5) written advice on pregnancy. They are not a blueprint for detailed HHT management, but are suitable for all clinicians to be aware of and implement.
In summary, these 5 Outcome Measures provide metrics to identify healthcare providers of good care, and encourage care improvement by all healthcare providers.”
Read the HHT Outcome measures here
The HTAD-WG is currently working on defining their clinical outcome measures.
The MSA-WG is currently working on defining their clinical outcome measures.
Coming soon!!!
The PPL-WG is currently working on defining their clinical outcome measures.
The VASCA-WG is currently working on defining their clinical outcome measures. They are involved in/actively following the ongoing OVAMA (Outcome Measures for Vascular Malformations) project.