Closed UK: DecodeME updates, was recruitment thread.

[InitialConditions]

As of January, over 17,000 people had completed their questionnaire and over 9,000 were asked to give a sample. That's the most recent update I know of. For context, they want the DNA of 25,000 total pwME. Not everyone is asked to give DNA, perhaps due to comorbid conditions etc., but the answers from the questionnaire will be the biggest ever survey on ME and contain valuable information.

I'm a little dissaspointed by the numbers. It seems we're likely stuck around 10k for DNA samples, far shy of the 25k goal.

Frankly, we don't get, or otherwise see, many enquiries at all about the numbers participating, so there doesn't seem a substantial need for it. I'm happy to be convinced otherwise though.

IMO, it is important to patients because every extra patient adds power to the study. Personally, I would like to know what the project leaders and researchers think about this, and what has been discussed about not meeting the target.

 

[RedFox]

Constantly updating participant numbers is unnecessary, but an update every couple months would be very informative.

 

[Sasha]

Frankly, we don't get, or otherwise see, many enquiries at all about the numbers participating, so there doesn't seem a substantial need for it. I'm happy to be convinced otherwise though.

I'm not surprised that no one inquires - the purpose of a running total is to persuade, by providing social proof that loads of people are doing the thing that you're being asked to join in. That's why crowdfunding sites and petitions show running totals.

Now that this point has been raised, I'm actually a bit horrified that if you look at DecodeME's homepage, there's no indication that anyone has signed up at all! I know that the team is under pressure but what about a big, eye-catching thing at the top that shows the total so far to the nearest thousand, with the target, and that gets updated every time you've got another thousand? Or however often it's possible to do it?

Because the default assumption will be that hardly anyone has signed up. I think we're really missing a big trick here.

 

[Tia]

I'm not surprised that no one inquires - the purpose of a running total is to persuade, by providing social proof that loads of people are doing the thing that you're being asked to join in. That's why crowdfunding sites and petitions show running totals.

Now that this point has been raised, I'm actually a bit horrified that if you look at DecodeME's homepage, there's no indication that anyone has signed up at all! I know that the team is under pressure but what about a big, eye-catching thing at the top that shows the total so far to the nearest thousand, with the target, and that gets updated every time you've got another thousand? Or however often it's possible to do it?

Because the default assumption will be that hardly anyone has signed up. I think we're really missing a big trick here.

Interesting for us, but if I knew nothing about DecodeME and was encountering the website for the first time, I'm not sure a running total would persuade me to sign up. Maybe I'm wrong. But I do think it's important not to overload the website with too much information.

 

[Sasha]

Interesting for us, but if I knew nothing about DecodeME and was encountering the website for the first time, I'm not sure a running total would persuade me to sign up. Maybe I'm wrong. But I do think it's important not to overload the website with too much information.

A running total wouldn't be for us - we'll all have signed up long ago. And people can be persuaded to sign up without realising that they're being persuaded. When you're thinking about donating to a cause or signing a petition, don't you look at how many people have already done so, to see if it's worth your time? I do, and I think a lot of people do.

If I was a newbie visiting the DecodeME site, a big number would make me feel that it was worth me taking part and also making the effort to promote to other PwME.

I'm sure there must be some marketing research on this but I wouldn't know where to look.

 

[Andy]

and what has been discussed about not meeting the target.

We are, of course, concerned that we are a considerable way away from our target number of DNA donors. A lot of discussion has taken place about what we can do to improve these figures, and we are working on multiple ways to improve this.

I'm afraid I don't have the resources to reply further at the moment. I have highlighted to the team the idea of a prominent running total has been raised; I do know that this was something discussed some time ago but I can't recall the reasoning at the time for not including it.

 

[Dolphin]

Arguably the most important time for a total is when the target is close to being reached: one doesn’t want to put in too much effort that is not required (i.e. if a target has been reached). At the moment, we are clearly a long way from reaching the target so everyone should be trying their best to reach as many as they can. I too of course am curious about running totals.

 

[NelliePledge]

Maybe just a quarterly update @Andy?

 

[chillier]

@Andy or whoever might know. Is there any particular reason why 20,000-25,000 people was chosen as a target? Is there a power calculation anywhere? Might 9000 people be sufficient to detect some important signals?

 

[Andy]

@Andy or whoever might know. Is there any particular reason why 20,000-25,000 people was chosen as a target? Is there a power calculation anywhere? Might 9000 people be sufficient to detect some important signals?

From the FAQ,
"Until the first GWAS study for an illness is done, it is just not possible to know how meaningful its findings will be. However, we’ve chosen to study the DNA of 25,000 people with ME/CFS because other projects of this size commonly found around five causal links between DNA and disease diagnosis. ME/CFS could have many independent genetic causes and a study of this size will have a chance of revealing part of this potential spectrum of genetic causes."

https://www.decodeme.org.uk/faqs/wi...ningful-findings-and-to-detect-any-subgroups/

Simply put, the larger the number of samples, the larger the chance of finding anything, and the larger the chance of finding more (if more exist). In theory, it might be that 9k would be enough, but the closer we can get to 25k the more confident we can be that we will find what there is to find.

 

[RedFox]

Yes, having more participants is like having a higher gain antenna, you pull the signal out of the noise.

Man, I really hope we get enough participants to show something strong. If we found several several genes that had nothing to do with cognition, with adjusted p of 0.0001, that would blow the BPS model out of the water.

 

[Kitty]

Do we know much about why the numbers aren't as good as we'd hoped? Is it that quite a lot of folk haven't been asked to give DNA because of potential confounding conditions or unclear diagnosis? Or are there substantial numbers who showed initial interest, but either didn't complete a questionnaire or didn't return their sample?

Not sure whether we're not reaching people in the first place, or not convincing some of those we have reached.

 

[Andy]

Is it that quite a lot of folk haven't been asked to give DNA because of potential confounding conditions or unclear diagnosis?

We are currently seeing around 50% of participants who complete the questionnaire being invited to donate DNA.

Or are there substantial numbers who showed initial interest, but either didn't complete a questionnaire or didn't return their sample?

We had, from memory, around 27k people sign up to updates and indicate they were interested in taking part before we launched. So far we have had less than 20k complete the questionnaire, so there is a significant difference between the two figures, however we are advised that, in marketing terms, that level of response is still impressive.

Not sure whether we're not reaching people in the first place, or not convincing some of those we have reached.

Probably a bit of both, as well as other factors.

As part of our continued efforts to reach more people, an invitation was emailed out to all those who signed up to the UK: Be Part of Research registry and who indicated that they were interested in ME/CFS research. It's highly unlikely to bring in big numbers but it is obviously another route that we are using to find potential participants.

 

[Kitty]

It is a very impressive response. I'm a bit surprised at the 50% rate, I'd somehow imagined it might be more like two thirds or three quarters being invited to submit, but I'm sure that's only because I don't know enough about it.

I only know two people personally with ME, so I don't really know how to push it. I've shared the ads lots of times on Facebook, but because I only use social media to stay in touch with local wildlife survey groups and almost never post anything, I'm not sure if people saw it. I'm probably at the very bottom of the algorithm list due to little or no activity.

 

[Dolphin]

I imagine this has been discussed in-house: ME awareness month/week/day is a time the local and national media can be more receptive to coverage of ME items including potentially this one.

Also individuals could potentially help with this, writing to local media to say they were taking part/were excited by this and of course encouraging others to do so.

 

[Robert 1973]

Thanks @Andy My feeling is that it [a running total] might be helpful. I’ve no expertise but it’s always done for fundraisers etc. so I guess it might help to incentivise people to promote and share it in order to reach the targets.

Even if the total was only manually updated once or twice a month i think it be could help.

Maybe participants could be sent updates when certain targets are met (if they give permissions) and asked to share etc.

I’m also wondering if there is anything that I and other S4ME members not on the DecodeME team might be able to do to help to promote it.

I’ve always founds emailing or direct messaging friends/contacts to be a more effective way of sharing fundraising campaigns etc. Are there any email or text templates for people to use and share on the site?

Is there another press release planned?

[edit: sorry, I only saw other replies above after I posted this]

 

[Dolphin]

What I would like whenever the figures come out is a breakdown showing that the numbers have decreased in recent months and that people can’t simply assume the target will be reached by the deadline. DecodeME don’t explicitly need to say the target isn’t heading to be reached if they don’t want but if there is enough data I imagine it will likely show it’s a possibility (I’m presuming).

Something like that would be good to encourage lots of people and groups to try hard to reach people, as opposed to sit back.

 

[Sid]

We had, from memory, around 27k people sign up to updates and indicate they were interested in taking part before we launched. So far we have had less than 20k complete the questionnaire, so there is a significant difference between the two figures, however we are advised that, in marketing terms, that level of response is still impressive.

Impressive response rate. Considering how few people in the UK have actual ME/CFS (as opposed to PACE/Crawley broadly-defined fatigue), a target of 25k was super aspirational IMO. Perhaps recruitment could be expanded to other countries.

 

[MSEsperanza]

I’ve always founds emailing or direct messaging friends/contacts to be a more effective way of sharing fundraising campaigns etc. Are there any email or text templates for people to use and share on the site?

See: https://www.decodeme.org.uk/ways-to-share/

"Plus we have ready-to-go social media posts and text messages to copy and paste below."


Short message (under 280 characters)

Longer message (above 280 characters)

Take part in DecodeME, the world’s biggest ME/CFS study.

It will collect information from tens of thousands of people with ME/CFS and analyse DNA to see whether the disease is partly genetic and if so, help pinpoint what causes it – which is the path to finding treatments.

The first step is to take the DecodeME questionnaire and then you may also be asked to provide a saliva sample. Both can be done from your home.

Your experience matters.

You can take part at www.decodeme.org.uk/portal.

Both messages are directed directly at potential participants.

I wonder if it made sense to have also messages directed at people to ask them spread the word even if they think they don't know anyone affected by ME/CFS.

Also, I wonder if it could help if people could order printed flyers, leaflets and posters.

I think the leaflets and posters on the DecodeME 'ways to share' page are excellent and it would be great if people distributed them to surgeries, pharmacies, grocery stores, libraries etc.

I imagine though it's too high a hurdle if local self-help groups and other volunteers have to print leaflets and posters themselves.

So how about e.g. Action for ME having a stock of flyers and posters made by offset printing and e.g. local self-help groups could order them and distribute them?

 

[Robert 1973]

Thanks for the info @MSEsperanza

I think asking ME Action and possibly other groups/orgs to print and distribute posters and flyers is a good idea.

What I’m wondering is whether not enough people with ME have heard about DecodeME or whether there are not as many people with ME/CFS as thought, or perhaps a combination of the two.