NORSE Family Registry to Close at the End of 2025
The NORSE Family Registry, established in 2019, has been a vital hub for sharing the experiences and insights of patients and families affected by NORSE and FIRES. Over the past six years, it has gathered valuable data on outcomes and given families a meaningful way to contribute directly to research.
Findings from the registry have already helped shape the direction of future NORSE studies. They’ve influenced how researchers design their questions and measure patient experiences, leading to new projects such as the PCORI-funded clinical trial and the Doctor-Family Communication study.
Families affected by NORSE and FIRES have spoken openly about the challenges and positives of communicating with medical staff during ICU stays. In response, researchers are now exploring these experiences in greater depth to understand what works well, and what could be improved.
This new study, led by Dr Krista Eschbach (Children’s Hospital Colorado) and Dr Kristen Sydney Fisher (Baylor/Texas Children’s Hospital), aims to formally record and analyse feedback from families. Parents and caregivers of NORSE/FIRES patients whether their loved one has survived or passed away are all invited to take part.
The international registry, hosted on the REDCap online platform, will officially close in December 2025. Families and patients who would like their experiences included are encouraged to enrol before the deadline.
A heartfelt thank you goes to everyone who has taken part in the NORSE Family Registry over the years. Your time, openness, and experiences have made a lasting impact on research and continue to help guide the way towards better understanding and care for those affected by NORSE and FIRES.
