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Quality of Life Working Group

The ERNICA Quality of Life (QoL) Working Group was established at the end of 2022 and is an integral part of the overarching patient journey workstream.

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Together we work towards better care and treatment for the affected individuals and their families, preserving and improving their QoL​


This is an important part of a holistic approach to advance knowledge of and improve long-term outcomes, using multidisciplinary and international competence to create an increased understanding and adaptation of clinical, psychological, social, environmental aspects of QoL in children and adults and their families across countries/cultures ​


Furthermore, to generously share knowledge and facilitate sustainable and new collaborative research, focusing on these aspects in conditions covered within ERNICA 

The Quality of Life working group is here to...


  • A focus on Patient Reported Outcomes (PROs) / QoL) 

  • Collaborative PROs / QoL initiatives 

  • Use of Patient Reported Outcome Measures (PROM) / QoL questionnaires in research, clinical practice and registries. 


  • Availability of standardized condition-specific PROM / QoL questionnaires in many languages. 

  • Development of patient / family educational and self-help materials.

  • Standards of meaningful patient involvement are met. 

Create learning...

  • Methodology

  • Existing literature / current knowledge

  • Dissemination

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