DecodeME Questionnaire webinar transcript: study launch update


Hi, everybody. Welcome to another DecodeME webinar. My name is Sonya Chowdhury. I’m Chief Executive of Action for M.E., and I’m also part of the DecodeME team, so I’m going to be sort of chairing the webinar today.

I’m going to start off by giving you a bit of an update and then I’m going to hand over to Chris. He’s going to explain how you actually take part in this study, and then Sian is going to tell you about the work that we’ve done with patient-public involvement at the heart to develop our new DecodeME questionnaire. It’s an improved questionnaire and it’s been developed on the back of feedback that we’ve had from our first group of people that have helped us refine what we do and how we do it.

So we began our online testing phase in June and we randomly selected 500 people who’d registered their interest via the website, and if you haven’t done that already, please go and do that at -you’ll be first in line to hear when the full recruitment launches. So it’s really important that you do that if you want to get ahead.

So we had 500 people who were selected to take part in the Phase One testing and they signed up and completed the questionnaire and they were also asked to give us feedback to tell us what we could do better. This has been really useful. It was mostly positive and the majority of people told us that it was easy or very easy to use the questionnaire, and the questions were easy to understand, but we got some really interesting feedback, which we’ve been able to act on as well. Some of those participants were also sent spit kits (and Chris will tell you more about what that means in a minute), and they’ve been providing their DNA samples. It was really exciting for us as the DecodeME team and we’re a massive team. It’s really exciting to hear that the first spit kit and saliva samples had been received and were being processed. So they’re still coming back to us. People have taken a bit of time to complete all the steps that they need to, but those numbers are increasing day by day.

The other thing that we want to tell you is that we are going to launch in September. We have waited, you have waited a long time. You’ve been so patient in supporting us and giving us time to make sure that we get this as good as we possibly can with patient and public involvement right at the very heart. And I have to say, I think all of us would agree, and the scientists that we’ve been speaking to outside of the study, our scientific advisory panel have all said that the quality of science is so much better because of the patient and public involvement right from those that are working within the team to our social media ambassadors that are working to support us with recruitment and through to a large number of you that have contributed to questionnaires and surveys giving us feedback at various points over the last couple of years.

So before I hand over to Chris, I want to say we want to say a huge thank you to you, and we are really excited about launching in September. If you’ve signed up and registered your interest, you will get information a little bit ahead of everybody else, and we will confirm the date very soon. So I’m now going to hand over to Chris, who will introduce himself and tell you about how you can take part.