This post provides an overview of activities on Day 1 at the World Parkinson’s Congress meeting in Kyoto.
After a spectacular opening ceremony the night before, Day 1 began with some impressive keynote presentations. Then came a series of fascinating workshops and roundtables before poster tours and social activities.
In today’s post, we will discuss what happened at day 1 of the WPC meeting.
Following the amazing activities on Day 0 (Click here to read more about that), attendees of the World Parkinson’s Congress woke up to beautiful weather on Day 1.
The date was the 5th June, and the weather was sunny with a humid high of 32 degrees C. (89.6 F).
The first order of business each day at the conference is checking the programme to see what presentations/workshops/lectures/activities you would like to take part in.
This is the WPC meeting programme:
And an average day at the WPC will be broken down into various sessions, which will have presentations and workshops running in parallel. For example, an early afternoon session (between 1:30 and 3:00) will look like this:
If you would like to download the programme – click here.
As you can see there are many overlapping lectures/activities (I will come back to this later).
Today, I was very interested in firstly catching the Plenary lectures in the morning (from 9:30 – 11:30). Of particular interest was a presentation by Dr Soania Mathur, who spoke about “Patients as living science – the importance of participating in clinical trials“.
Dr Mathur is a physician who was diagnosed with Parkinson’s at age 27 and has gone on to become a very dedicated and prominent Parkinson’s advocate. She has written two books helping to explain Parkinson’s to children, represents the PD community on numerous patient councils, and is a regular speaker about her condition.
Here is a great video of her speaking:
In her WPC talk, Soania noted that 85% of all clinical trials are delayed by recruitment difficulties, and up to 30% of trials fail to recruit a single participant.
“Without our participation, the search for better treatments and a cure will not be possible”
It was a powerful talk.
Following Dr Mathur was a presentation by Dr Jesse Cedarbaum, who is a neurologist and Vice President, Movement and Neuromuscular Disorders Clinical Development at the pharmaceutical company Biogen.
He spoke about the various on going clinical trials targetting alpha synuclein, including the SPARK study which is being conducted by Biogen. He listed some of them on a slide:
And he made a point of highlighting the tremendous growth in ongoing clinical trials targeting alpha synuclein, by saying “I couldn’t have made this list 5 years ago”.
His talk quickly became a tour de force, covering a lot of bases. From biomarkers and brain imaging to selecting the right patients and outcome measures. Everything was discussed in this talk. And it was particularly refreshing to hear him acknowledge the efforts of competing biotech firms (Roche/Prothena), and calling for the need to share data – he mentions the Critical Path for Parkinson’s initiative as an example of this.
“No one company or institution can do it all”
Here is a video of Dr Cedarbaum being interviewed in 2016:
During the lunch session, Prof Toshiharu Nagatsu gave the first of two James Parkinson lecture at the WPC meeting.
He was speaking about history of Parkinson’s research in Japan. For those unfamiliar with Prof Nagatsu, research into the rate-limiting enzyme tyrosine hydroxylase – which is involved in the production of dopamine – started with this man.
His contributions to the field of Parkinson’s are considerable and significant.
Unfortunately, I could not stay for the full lecture as I had to run off and prepare for my round table with AC Woolnough.
We have discussed the topic of the round table – Planet Patient vs Planet Researcher: How do we align instead of collide? – in a previous SoPD post (Click here to read that post).
I have to be honest and say that our round table was not overrun with folks keen to discuss the topic.
In fact, our Japanese translator (Hisashi – nice guy!) had nothing to do but sit back and enjoy the conversation that was had between the 5 of us sitting around the table.
I was very grateful to the folks who turned up and we had an interesting discussion during the session, but I suspect the topic of our roundtable did not have as much pulling power as more useful topics for individuals, such as Dr Laurie Mischley’s roundtable topic of “Is there any evidence that nutrients modify PD?” – a topic with more practical output/advise for participants. Laurie is amazing – click here to read a previous SoPD post about her work, or just watch this video:
As for our roundtable, AC Woolnough and I had no expectations going into it. We certainly were not expecting to solve all of the issues of how to better align the interests of the research world and the Parkinson’s community, but we did have an interesting discussion about way in which things could be improved.
And we came with postcards on which participants could write various goals and we could send it to them to remind them of their goal when they got back home. This was done with the intension that they would be able to feedback on their experience afterwards.
Given the low turn out, however, this did not go according to plan. But as I say we had an interesting discussion and it was nice to meet both AC and the roundtable participants.
Immediately after the roundtable, I was co-chairing a session on “How to distinguish fake from real scientific and clinical advances” with Prof Jonathan Kimmelman (a bioethicist & meta-scientist who studies drug development and risk in Montréal, Canada).
A difficult distinction. Source: Mhp
The speakers at our session were:
- Elena Becker-Barroso (Editor-in-Chief of the scientific journal The Lancet Neurology)
- Jon Palfreman (reporter, writer, producer, director and educator best known for his documentary work on Frontline and Nova)
- Benjamin Stecher (Parkinson’s advocate, co-founder of the Parkinson’s Research Advocacy Group, patient advisor to the World Parkinson’s Congress, and founder/editor of Tomorrow Edition)
Elena took the audience through the process of what is required for publishing research, while Jon and Ben both highlighted issues associated with that process. There were no clear ways of resolving the issues resulting from the session, but the animated Q&A session at the end of the presentations suggests that the audience were engaged and enjoyed the discussion.
And immediately after this, I was lined up to lead a poster tour.
At the WPC meeting, there are two halls full of posters. The posters cover all aspects of Parkinson’s, from basic/clinical research to useful resources for partners. Poster tours are organised by the meeting coordinators to help engage people with topics of interest to them.
A poster tour involves following a predesignated path through the poster halls and stopping at specific posters to have presentations and ask questions. My tour was called “Clinical trial design and patient involvement” and it involved visiting 6 posters in the course of 90 minutes.
The posters we visited were all very interesting, focusing on deep brain stimulation and duodopa approaches to dealing with Parkinson’s. But the pick of the bunch was probably the Australian Parkinson’s Mission poster, which was presented by Prof Simon Lewis and Prof Antony Cooper (the coordinators of the initiative).
We have previously discussed the Australian Parkinson’s Mission on this website (Click here to read that post), but it was very interesting being able to address questions to the folks actually leading the effort.
Prof Lewis has a great website, on which he regularly posts videos where he explains various aspects of Parkinson’s, such as this recent video where he spends an hour discussing new developments in the treatment of Parkinson’s:
And after the poster tour finished, that was basically the end of the first day.
I say basically, because there might have been a bit of socialising going on in the evening. At the end of a long first day, I found myself sitting in a small sushi/dumpling bar between stem cell expert Laurent Roybon and legendary Parkinson’s advocate Martin Taylor (founder of the Facebook Parkinson’s research interest group):
Not a bad spot to find yourself!
Summing up the first proper day of the WPC meeting – what were my take aways?
1. It is an amazing event! I can honestly say that there is no other research conference quite like this (not that I have ever been to at least). It is truly unique.
2. The parallel nature of the meeting is a bit frustrating. I was busy the whole afternoon and there were a multitude of presentations that I had wanted to see. Perhaps the next WPC could explore the idea of recording talks so that folks can view them at their leisure later. In this modern age of technology, this is not a big ask (most laptops can record sound and powerpoint slides). This would be great for people who could not attend the meeting as well.
3. The interactions are fantastic! It is wonderous to see some of the best researchers in the world talking in corridors with interested members of the Parkinson’s community. And likewise, members of the research community actively seeking out people like Joy Milne (the lady who can smell Parkinson’s – click here to read more about this). “Can you introduce me?” was a regular question being asked.
I am tired at the end of the first day, but eager for more and I look forward to what the next 2 days hold.
The banner for today’s post was sourced from me