Burning Nights CRPS Support formally endorses the OptiMeth-CRPS framework

Burning Nights CRPS Support, UK national charity for Complex Regional Pain Syndrome (CRPS), is pleased to announce its endorsement of the OptiMeth-CRPS framework, a groundbreaking initiative aimed at optimising the quality of future clinical trials in Complex Regional Pain Syndrome (CRPS).

Recognising the challenges of undertaking high quality clinical trials of treatments for CRPS as a rare pain disorder, the OptiMeth-CRPS project gathered together an international, interdisciplinary group of people with lived experience of and research experience in CRPS as well as people with expertise in running clinical trials in general and rare conditions in particular.

The network met on multiple occasions between July 2023 and May 2024, including two 2-day meetings at University College Dublin, Ireland with the goal of developing a practical framework for people undertaking future clinical trials involving people living with CRPS.

Details of the framework are publicly available as a White Paper and as an academic journal paper in Pain Reports.

The ‘OptiMeth-CRPS Framework’ outlines nine steps for improving CRPS trials:

Forming a capable trial team that involves patients and the public
Creating clear research questions
Managing trials well
Designing rigorous trials
Choosing suitable trial participants
Choosing and comparing treatments appropriately
Measuring outcomes that are meaningful to people living with CRPS
Evaluate the findings correctly
Making sure everything is clearly and fully reported

This framework is offered as a tool to support the CRPS research community to perform high quality clinical trials when testing different treatments for CRPS.

Infographic illustrating the OptiMeth | CRPS framework for optimising clinical trials in Complex Regional Pain Syndrome. It highlights key trial phases—Plan, Design, Conduct, Report—surrounded by components like trial team, design, population and data

The OptiMeth-CRPS team are delighted to discuss any aspect of the framework and its recommendations with you and offer support and collaboration for any initiatives that might further implement the framework.

The OptiMeth-CRPS network project was funded by the Health Research Board under the ERA-NET Neuron Co-Fund Scheme (Proposal ID NEURON_NW-008).

Project Co-ordinator: Dr Keith Smart, University College Dublin. Email: k.smart@ucd.ie.

Get Involved: Your voice can shape CRPS research

At Burning Nights CRPS Support, we believe that research shaped by people living with CRPS—and those who care for them—leads to more meaningful and impactful outcomes. Your experiences, insights and questions help researchers understand what truly matters to our community.

If you’re interested in getting involved in CRPS or pain-related studies, visit our Research Opportunities Tracker to explore current opportunities. Whether it’s sharing your story, joining a focus group, or taking part in a study, your voice can help drive change and bring us closer to better understanding and treatments for CRPS.

Burning Nights CRPS Support formally endorses the OptiMeth-CRPS framework

Get Involved: Your voice can shape CRPS research

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