Research Release: The impact of cysteamine treatments on life with cystinosis

We are happy to announce the results of our latest collaborative research, “The impact of different cysteamine formulations on the lives of people living with cystinosis.”

This research announces important findings from a survey conducted in collaboration with Metabolic Support UK and Kidney Research UK, aiming to better understand the day-to-day experiences of those living with cystinosis, as well as their parents and caregivers.

About the survey

Between July and September 2024, we gathered data from individuals living with cystinosis, along with their families and caregivers, to assess how different treatments— immediate-release cysteamine (known commonly as cystagon) and delayed-release cysteamine (known commonly as procysbi)—affect their quality of life. The survey explored various aspects of daily life, including physical, emotional, and social well-being, as well as treatment impact.

Key findings

The report finds following conclusions:

• Treatment adherence, quality of sleep, bad breath, and body odour impact the lives of people living with cystinosis more when they are taking immediate-release mercaptamine bitartrate than delayed-release mercaptamine bitartrate.​
• Other aspects that may impact the lives of people with cystinosis, such as nausea, stomach pain, and mental health were also investigated but did not show conclusive results.

Access the report

A poster of our research is now available here to download or read.

With thanks

We would like to thank everyone who participated. Your input has helped us gain valuable insights into the challenges faced by the cystinosis community and will help us share you voice, as well as shape our future support.

A grant was received from Chiesi Ltd to support this project.