Towards safer, more personalised steroid treatment for children!
ENCA is supporting PHORECAST, a European research project aiming to make steroid treatment safer and more personalised for children with diseases involving the immune system. The project brings together nine institutions across seven European countries, combining scientific expertise with patient and family perspectives.
Children can respond differently to steroid treatment. PHORECAST compares treatment courses lasting three and five days, using clinical information, experiences reported by patients, and blood and urine samples. Researchers are looking for biological signals, known as biomarkers, that could help predict how a child will respond and their risk of side effects. The aim is to support treatment decisions that better match each child’s needs.
Learn more about PHORECAST…
Bringing patient and family voices into research
Working alongside the French patient organisation KOURIR, ENCA helps connect patient representatives from different countries, supports consultation with the wider patient community and contributes to sharing project findings. A Patient Advisory Board will help bring family perspectives into discussions about research priorities, study participation, communication and results.
Why this matters to ENCA
For us, meaningful research starts with understanding what matters to children and families. Alongside treatment effectiveness, this includes the experience of receiving care, the impact on everyday life and having clear information when making decisions. By connecting researchers with our community, we want to help turn lived experience into research that asks relevant questions and produces findings families can understand and use.
Coming soon: ENCA webinar on PHORECAST
ENCA will host a webinar introducing PHORECAST and its relevance to children and families. We look forward to making the research accessible to our wider community and highlighting the importance of patient and family involvement.
The date, programme and registration details will be shared through our website and social media channels. Stay connected for updates!
