Chris Ponting’s update on study progress (January 2022) from our webinar:
It’s a very complicated study, as has been said. So we have done a whole variety of things. We’ve got permission from the UK Biobank to use the data which we need for the comparison with the general population. So this is a UK-based study so we need people from the UK against whom we will compare the genetics of people with ME. So that’s now done.
And what else have we done? We are testing and testing and testing and whenever we test we will find things that aren’t exactly right and we found that fixing those those issues has has taken a little bit of time more time than we would have wished and then we’ve obviously gone back into another round of testing, so I think we’re in a really good place.
We’re looking forward to recruiting our first participants on the last day of this month and just, if I may Sonya, just talk a little bit about our recruitment plan at the moment so we’re going to be starting quite slowly and that’s deliberate with tens of participants and we’ve chosen people to participate at the beginning, those who are severely affected by ME, and we’ve chosen these people because they’ll need more time to complete paper-based questionnaires and we’re processing these paper questionnaires by hand. Deliberately again, so that will allow us to iron out problems with the electronic data management system. So that’s the first bit, then we’ll go and ramp up with some hundreds of participant numbers. [It] will not be in the thousands because we’re still ironing out issues with the platform.
We have been working with our partners every week Solve to adapt their existing platform which needed some additional functionality so it wasn’t something that we just took off the shelf and we’re still finding things that they need attention, so we stopped testing and then start again once the issue is resolved. As I said earlier, this has taken us longer than we’d anticipated and it’s still ongoing. So the speed at which we ramp up from the hundreds to the thousands is not entirely clear but i’ll say what I’ve said before in these webinars, that people such as yourselves who have waited for such a long time too long for a large study such as this, we owe it to you to launch in the most successful way possible and we won’t compromise.
We’ve always done things in the best possible way and we’re not going to change that. So that’s my update and I look forward to hearing from people later and with questions.
Read the rest of the webinar transcript:
Launch update from Chris Ponting
Claire Tripp’s talk on Patient & Public Involvement
Anna Redshaw and Pippa Stacey’s short video talks
Your questions on the study answered