Clinical Outcome Measures
VASCERN’s Paediatric and Primary Lymphoedema (PPL) Working Group is committed to improving care and outcomes for children and adults living with primary lymphoedema. To support this goal, this group has developed a set of clinical outcome measures (COMs) that can be used by healthcare professionals across Europe to track patient progress, guide treatment decisions, and harmonise care.
These standardised tools allow for consistent assessment of physical, functional, and quality of life outcomes. By using validated outcome measures, clinicians can better evaluate the impact of interventions over time and contribute to efforts to improve care for this rare and complex condition.
You can download the latest version of the Clinical Outcomes Dataset for Adults and Children below.
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.