Research Participants Needed: Volunteers needed for a study to measure brain activity during sleep at home

[Stroke_Research]

University of Oxford

Keywords: Sleep, rehabilitation, home-based, smart devices, movement

Open to: Adult stroke survivors with access to a smart device (e.g. smartphone, tablet).

How to Apply: Please email sleep-win@ndcn.ox.ac.uk

Further Information: Participant Information Sheet

Research participation requests are sent to the Stroke Association from external research institutions (e.g. universities and hospitals).

We conduct checks on these before promoting but are not involved in their running. This means we cannot comment on trials and have no affiliation with them.

What is the opportunity about?

Auditory (sound) stimulation during sleep may help boost memory of new movement tasks by altering brain activity during sleep. This has the potential to be used as part of rehabilitation after stroke.

We are currently seeking to understand how brain activity during sleep is different for people who have had a stroke, compared to people who haven’t.

What will it Involve?

You are invited to participate in a study in your home. You would be asked to wear a headband to record your brain activity for 3 nights.

We will also ask you to fill in questionnaires about yourself, and your sleep (approx. 15 minutes)

Who can take part?

We are looking for volunteers, who had a stroke at least 6 months aged 18 and over.

You should be living in the United Kingdom and not have a neurological or psychiatric condition [other than stroke] that precludes participation.

You should also have access to a device (e.g. smartphone, tablet) to download an “app”.

What will you get from taking part?

While there are no immediate benefits for those people participating in the project, it is hoped that this research will lead to development of this technique, which may in the future be tested as a way of improving recovery after stroke.

You will receive £25 for participation. This will be transferred from the University to your bank account, or if you prefer we can send you a shopping (e.g. Amazon) voucher.

How Can I Take Part?

If you are interested and would like more information, please contact Triin at the Wellcome Centre for Integrative Neuroimaging by emailing sleep-win@ndcn.ox.ac.uk

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Information on taking part in research

Research participation helps research teams to test new ideas and approaches by sharing information or trying new approaches in clinical trials.

Find out more about taking part in research

Taking part in clinical trials can support research to:

• Stop strokes from happening.
• Treat strokes.
• Support people to rebuild their lives.

By taking part in research, you can help us to learn more about stroke and make a difference in the lives of future stroke survivors.

Find out about how our research has made a difference in the lives of people affected by stroke.

We have produced the Clinical Trials and Stroke booklet to explain more about clinical trials and answer questions you might have about taking part. The booklet was produced with the NIHR Clinical Research Network.

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Information on Research Involvement

Research Involvement is a different way of contributing to research that involves collaborating with researchers to design decisions about how research is shaped and conducted.

You do not need any research knowledge to do this, your lived experience is what would otherwise be missing. Involvement is about contributing this to shape projects in ways that create most potential to benefit people affected.

Find out more about how to get involved shaping research.

[Nigelglos]

Could the stroke association insist that one of the criteria for promoting the research is that the outcome of the research is shared within the forum and/ or on the stroke association website ?

A number of people will be interested to know what the various research projects reveal.

This project for example, given 70% of stroke survivors develop sleep apnea, may be if interest to a large number of forum posters

[clibbers1]

I’ve signed up for this, don’t know I’ll be party to the findings. probably not !

[Nigelglos]

Yeh I have as well. Can’t hurt with me have sleep apnea

[Stroke_Research]

Hi @Nigelglos, thanks for your message, it’s a really good idea to have a place to publish the results of these studies.

We don’t have an appropriate place on the website that these would fit the remit for and be easily findable, but posting results here on the forum is a great idea!

We don’t have much staff time available for creating posts so they would be slightly striaght-forward postings of the results, following up with projects where we can, but it’s an excellent idea that we’ll start doing in some way from now!

[Nigelglos]

Hi
Thanks for your reply.

If the resource available is a bit tight, one option could be to ask the the function carrying out the research to advise of the summary findings in a pre formatted way ? It might be possible then to copy and paste that on to the forum to save you having to go through all details ?
Only the really interesting/beneficial ones might need a bit more of a read through.

Just as an example off the top of my head, they could include a summary for the SA something like

Title of research :
Date Concluded :
Participate benefits fully paid (if applicable) y/n n/a
Main findings :
Additional findings relevant to Stroke Survivors :
Follow up research y/n :

I included the benefit item as it might encourage them to double check.
Cheers
Nigel

[SimonInEdinburgh]

@Stroke_Research Dan you should have a conversation with Christina Okoye then
Simon

[clibbers1]

I think if the participants take the trouble to undertake the study then it’s only reasonable that the results are made available to those who might benefit.

[Stroke_Research]

Hi all, thanks agian for your interest and suggesting how we can get hold of this information.

I’ll get in touch with all of the research teams who have promoted studies with us between 6 - 18 months ago to ask for a public summary of their fundings and publish any of the results here. We ask them to send these to anyone that does participate, so they should have these to hand already.

I really like your headings @Nigelglos and will send these as a suggestion to the teams, with an additional one for links to further information.

I’m our involvement lead, supporting equal collaborations between people living and working with stroke, so participation requests aren’t something I can give much time to I’m afraid, as they’re about providing information, rather than supporting people to collaborate. This means I won’t be able to do much chasing, but will keep on sending emails out every few months and publishing anything that comes back!

[Nigelglos]

Did anyone else sign up for this one ?
Had my headset through last week and used it for the first time last night.
Up to now I have been using a smart watch. This is obviously different gravy in its reporting capability. Smart watches can’t really pick up being asleep and awake, think it’s an estimation based on movement (or lack of it).

[clibbers1]

I have, but haven’t got the headset yet. Hope its relatively easy to set up, as I’m not good with IT stuff.

[Nigelglos]

Yes, no real issues with setting it up. You need to Bluetooth it to your phone and connect it to the downloaded App and WiFi. The guide has some screenshots to help.

The information it reveals in terms of picking up that I am awake is pretty staggering. Far in excess of anything you might get from a smartphone.
One of the slight issues is the headset is slightly uncomfortable against my head when lying on my side.

The uncomfortable feeling might explain why I have woken lying on my back which is much more likely to lead to sleep apnea. According to what it has picked up, I look like I am “awake” for large parts of the night. No wonder I feel so tired today and muzzy headed. In a bit more pain, could that also be connected, who knows.

One bit it doesn’t explain too clearly, you need to charge the headset after you wake and this might take a good couple of hours. Just as a guess, it won’t send off the results until the charge gets to a certain point. You will see “results not sent” for ages until the headset has charged for what feels like some considerable time… I wasn’t getting results until late morning.

Couple of times, headset has slipped which will explain why there are some blank periods
Cheers
Nige

[Nigelglos]

My 3 days are up. Each day looked similar and definitely in need of some assistance to improve the quality of sleep.
My one overall thought is that the data revealed is massively superior to that from a smart watch and I would recommend this trial due to what it reveals.