LEARN study webinar reveals experiences of participants on neurosurgical trials

Participants, funders and principal investigators came together to discuss the key findings of a recent Cardiff University study, and to present resources that people with Parkinson’s disease and their support partners can use when considering research participation.

The LEARN study stands for ‘listening to the experiences of participants taking part in neurosurgical trials’. The study sought to understand both the experiences and any barriers to participating in trials involving neurosurgery, to administer both pharmacological and advanced therapies, as well as the the understanding of clinical trials within the general Parkinson’s population.  

Researchers obtained this data through interviews with trial participants and an additional survey generated in collaboration with Cure Parkinson’s UK. The interview content was informed by a participant consultation group, ethics advisory group and an independent advisory group made up of neurosurgeons, researchers, and individuals with lived experience of Parkinson’s disease (PD).  

From analysis of the interview transcripts, researchers were able to identify key issues affecting the experience and participant’s experience which was then used create informative resources that may help improve the experience of participation in future neurosurgical trials and reduce some of the problems that might cause people to drop out of research.  

“The study has highlighted many issues that need resolution before further neurosurgical trials are designed,” said Lesley Gosden, a LEARN study participant.  

Key issues identified were challenges associated with brain imaging, taking part in clinical trials when ‘off’ medication and support for support partners, plus the need to understand and retain a lot of information about the trial.  

Chief Investigators, Dr Emma Lane and Dr Cheney Drew were pleased to introduce several information videos and written guides on each of these areas so that participants and their carers may be better supported and prepared in future trials. 

Support partner, Jayne Calder said, “I believe that the LEARN study has created an opportunity to improve the journey of a participant from start to finish.”

Watch the webinar