DAAG welcomes constructive first meeting with MHRA as review of dopamine agonists gets underway
London, UK - 23 July 2026
The Dopamine Agonist Action Group (DAAG) has welcomed a constructive first meeting with the Medicines and Healthcare products Regulatory Agency (MHRA) as the regulator begins its review into the safety of dopamine agonists.
DAAG Co-Founders Freddie Waite and Emma Sanderson-Nash met with senior MHRA representatives, led by Chief Safety Officer Dr Alison Cave, to introduce DAAG’s work, discuss the scope of the review and how best to involve patients and families throughout the process.
We welcomed the opportunity to contribute at this early stage of the review and were encouraged by the openness of the discussion, the willingness to listen to patient experiences, and the clear recognition that people with lived experience have an important role to play in informing the review.
During the meeting, DAAG shared insights drawn from our own lived experience, alongside the hundreds of patient and family stories that have informed our work.
Among the key issues we raised were:
the various patient pathways where informed consent breaks down - where patients are not warned, where risks are misunderstood or dismissed, and where the assumed ability to recognise side effects or discontinue treatment is lost once symptoms develop;
why behavioural science should help inform future approaches to communicating risk, and why we do not believe simply adding more information to patient leaflets will, on its own, solve this problem;
the unique challenges posed by side effects that can impair insight, judgement and self-control;
the need for stronger, clearer and more prominent safety warnings - such as US-style ‘black box’ warnings and patient alert cards;
the limitations of the current evidence base in estimating the prevalence of impulse control disorders - particularly how shame, impaired insight and reliance on self-reporting can contribute to under-reporting and distort our understanding of who is most at risk, and lead to many patients obtaining a false sense of security
our support for a proactive patient recall, similar to that undertaken following the MHRA's review of sodium valproate, to help identify patients currently experiencing harm but who remain undiagnosed.
A central theme of the discussion was that dopamine agonists present a unique patient safety challenge because they can impair the very abilities that patients and clinicians normally rely upon to recognise, report and respond to harm. They may affect not only a person's insight into behavioural changes, but also the judgement, planning and self-control needed to seek help or successfully withdraw from treatment. DAAG argued that this means traditional approaches to informed consent, patient monitoring and adverse event reporting need to be reconsidered.
The MHRA acknowledged that the true prevalence of impulse control disorders is likely to be underestimated, reinforcing the importance of improving data collection, strengthening the evidence base, and hearing directly from patients and families.
DAAG encouraged the MHRA to expand the scope beyond impulse control disorders alone. Augmentation and withdrawal can cause significant harms in their own right, while the overlap between the various side effects can make recognition, treatment and recovery considerably more challenging. The MHRA also acknowledged that augmentation remains poorly recognised and understood by both clinicians and patients, reinforcing the importance of considering it within the review.
The meeting also explored practical ways in which patients can contribute to the review. We discussed the barriers created by shame, embarrassment and impaired insight, and how DAAG could help the MHRA engage with patients and families whose experiences might otherwise not be captured.
The MHRA confirmed there will be further opportunities for DAAG to contribute as the work progresses and that it would return with a proposed scope of the review for feedback
Emma Sanderson-Nash, Co-Founder of DAAG, said:
“This was a genuinely positive meeting. We felt listened to and were encouraged by the MHRA's willingness to involve patients from the outset. But this is only the beginning. There is still a great deal of work ahead, and we welcome the opportunity to help ensure the review reflects the realities faced by patients and families. We hope it leads to meaningful improvements in patient safety.”