By Meaghan Read – Community and Research Engagement Lead, Diabetes Victoria
On 17th March 2025, I had the privilege of attending a workshop hosted by Breakthrough T1D in Amsterdam. The aim was to explore the most suitable person-reported outcome measures (PROMs) to show the benefits of cell therapies among adults with type 1 diabetes (T1D).
The aim of cell therapy is to replace the beta cells that have been damaged or destroyed. Beta cells are the cells in the pancreas that make insulin. Cell therapy typically involves one or more islet cell transplants. Over the past 20+ years, this has needed a donor pancreas. Now, scientists are working on a future where transplants are based on stem cells. This would mean a limitless supply, which would make cell therapy available to anyone with T1D. To make this possible, regulators will need to know that cell therapy is better than existing treatments.
The workshop was organised by Prof. Jane Speight (ACBRD), Prof. Peter Senior (University of Alberta, Canada), and Dr Sufyan Hussain (King’s College London, UK). The workshop centred the expertise of people with lived experience of T1D. It also included professionals with expertise in cell therapy, PROMs and regulatory processes.
The organisers did an outstanding job of centring the lived experiences of people with diabetes and those receiving cell therapy. The day was brilliantly facilitated by two lived experience experts.
The first panel focused on what it is like to live with T1D. People with lived experience spoke about the real-world challenges of life with T1D. They all described advanced diabetes technologies as ‘transformational’. But they also described numerous examples of why this technology, as good as it is, is not good enough. The second panel focused on the benefits of cell therapy experienced by those who had received one or more transplants. These discussions set the tone for the rest of the day. The final panel involved experts in how to develop and validate PROMs. They discussed why these measures are crucial to people living with T1D, clinicians and regulators.
After each panel, small groups discussed what should be measured to show the impact of cell therapies on people with T1D, new ways to assess PROMs in this context, and the steps needed to move the field forward. By the end of the day, we had made significant progress in understanding the key factors for evaluating cell therapies in ways that matter to people living with T1D.
This event showcased the power of true collaboration between individuals with lived experience and experts in the field. It was an honour to be part of this important workshop, and to connect with some of the leading minds in the field. My heartfelt thanks to Breakthrough T1D and the organising committee for making this event possible. I look forward to continued progress in this area.
Disclosures: Breakthrough T1D paid my travel expenses and hotel accommodation so that I could take part in this workshop. The ACBRD invited me to publish this blog. My time is funded by Diabetes Victoria.
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