CAMPAIGN UPDATES AND PRESS RELEASES
DAAG response to 2026 Mayo Clinic Algorithm for RLS
London, UK – 13 July 2026 - The Scientific and Medical Advisory Board of the Restless Legs Syndrome Foundation has published its updated treatment algorithm in Mayo Clinic Proceedings. The guidance reinforces the move away from dopamine agonists as routine treatment, places greater emphasis on identifying and treating iron deficiency, and strengthens recommendations on patient monitoring, informed consent and safer withdrawal.
Read our full summary and response, including practical advice for patients, here.
Emma Sanderson-Nash, Co-founder of the Dopamine Agonist Action Group (DAAG), said:
“This is a significant and long-overdue step forward for patient safety for people living with Restless Legs Syndrome. The updated guidance closely reflects many of the changes DAAG has been calling for, including better informed consent, closer monitoring, earlier recognition of complications and safer withdrawal from dopamine agonists.
While this algorithm is specific to RLS, many of its underlying principles are relevant wherever dopamine agonists are prescribed. The challenge now is ensuring these recommendations are consistently translated into everyday clinical practice. Every patient prescribed a dopamine agonist should be fully informed of the risks, monitored appropriately throughout treatment, and supported safely if their medication needs to change. That is how we turn expert guidance into better outcomes for patients.”
DAAG meeting with MHRA confirmed
London, UK – 8 July 2026 - We are pleased to confirm that the Medicines and Healthcare products Regulatory Agency (MHRA) has accepted DAAG's request for a meeting as part of its ongoing review of dopamine agonists and their associated risks.
The meeting, scheduled for 20 July, will provide an opportunity to share the experiences of patients and families affected by dopamine agonists, alongside the evidence and recommendations that have emerged through our campaign.
In its response, the MHRA acknowledged concerns about the real-world impact of impulse control disorders, including the potential for under-recognition and under-reporting, and confirmed it is reviewing whether more can be done to improve communication and awareness.
We look forward to a constructive discussion and will provide a further update following the meeting.
Co-founder of DAAG, Freddie Waite, said:
"We welcome the opportunity to meet with the MHRA. We believe the prevalence and severity of dopamine agonist side effects have been underestimated for many years, and that there is an important opportunity to strengthen warnings, informed consent and patient safety. We look forward to a constructive and collaborative discussion."
MHRA review of dopamine agonist medications welcomed, with call for stronger evidence-based action
London, UK – 2 June 2026 – The Dopamine Agonist Action Group (DAAG) welcomes the MHRA’s review into dopamine agonist medications.
The group believes that current clinical guidance does not adequately reflect the evolving evidence on the risks associated with these medicines, including impulse control disorders and augmentation. As a result, there is concern that both clinicians and patients may not always be supported to make fully informed decisions or to implement appropriate monitoring and safeguarding.
DAAG notes that more recent evidence suggests a higher prevalence of impulse control disorders associated with certain dopamine agonists, including pramipexole, which may not be fully reflected in current risk classifications and clinical guidance.
The group has requested an opportunity to contribute to the MHRA consultation process, including sharing patient and clinical perspectives to support strengthened warnings, guidance, and safety monitoring. This request has been submitted directly to the MHRA and also raised via Layla Moran MP, Chair of the Parliamentary Health and Social Care Committee. Read our letter here.
Speaking on behalf of DAAG, Freddie Waite said:
“This review is welcome and an important opportunity to improve patient safety. We hope the MHRA will listen carefully to those whose lives have been profoundly affected by dopamine agonist medications, including patients and families who have experienced severe and life-altering consequences.
If this review leads to stronger warnings, better monitoring, and fewer families going through what so many have already endured, including myself, it will be a significant step in the right direction.”