The SEAM initiative is a patient-led project, started by Barry Chandler. Diagnosed with young onset Parkinson's 5 years ago, Barry is using his skills set (he is a logistics and efficiencies practitioner) to help improve things for the Parkinson's community. In his spare time, Barry runs the Study of Enterprise Agility Meetup (or SEAM group - https://www.meetup.com/Study-Of-Enterprise-Agility-Meetup/). SEAM is a group of 1000+ members who get together one evening per month to listen to speakers and then brainstorm/network ideas as to how systems and processes can be improved. The attendees come from all kinds of backgrounds, and Barry has asked them to help him devise ways of speeding up certain components of the clinical trials process.

Currently, it will take years to organise a clinical programme, let alone to actually conduct the trial. This means that a new drug will take approximately a decade to reach clinical approval - if it is approved. Obviously this is not acceptable, and the SEAM team are keen to apply their skills to improving the situation.

Last week was the second SEAM meeting that The Cure Parkinson's Trust (CPT) was involved with (the first SEAM meeting spelt out the problem), and the attendees of this latest meeting proposed some ideas which will be developed at the next meeting, with the goal of having some working prototypes that could be tested.

Further reading:
https://scienceofparkinsons.com/2019/02/18/seam/

CPT was also asked to speak in Newcastle at the launch of the Mobilise-D initiative. This is a €50 million project involving 34 international research partners based at leading international universities and some of the world’s largest pharmaceutical and tech companies.

The project is led by Prof. Lynn Rochester at Newcastle University, working closely with the pharma company, Novartis. The goal of MOBILISE-D will be to build an all-encompassing, clinically-valid digital mobility assessment system capable of use across all conditions where mobility loss is relevant and this will hopefully bring with it a personalised approach to healthcare for the benefit of people globally. This project will not be solely focused on Parkinson's.

At the launch meeting, CPT discussed issues specific to the assessment of mobility in Parkinson's. CPT's deputy director of research, Dr Simon Stott presented the current methods of assessment shortfalls:

- measurement of Parkinson's is too infrequent (occuring only once or twice a year)
- current measurement is too artificial (not relevant to the daily lived experience of people with Parkinson's)
- measurement systems are too subjective (for both the doctors and the patients)
- current measurement lacks meaning for patients (a motor score of 30 tells one very little about a person in terms of their rigidity or tremor)

Dr Stott also implored the attendees to listen to people affected by the condition, rather than simply measuring what they 'can' measure. The Cure Parkinson's Trust looks forward to seeing the output of the consortium.

Read more from Dr Simon Stott's video diaries here #TheStottSpot