Communication and Aphasia Research Registry
University College London
Open to: people with a language impairment as a result of a stroke or brain injury.
Deadline: open ended
Apply: complete a form to register your interest
Contact: If you would like more information please please contact Holly Robson at firstname.lastname@example.org
The Communication and Aphasia Research Registry is a network of people with language impairments interested in hearing about or taking part in research.
The directory works like a mailing list, where you can sign up to receive opportunities to participate in relevant research studies as and when they arise. Participants will also be offered the opportunity to take part in work to shape research.
The team would prefer eligible participants to be signed up to the directory with the help of a Stroke Association staff member. This is so you can be supported to complete the necessary forms to go to the next step.
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?
People with language impairments are often excluded from research because of concerns about their ability to consent and because people with severe language impairments often find it difficult to access information.
People with severe language impairments may be unable to fully access community services such as stroke support groups, because they are not always able to participate or understand in these environments.
This research aims to identify people with communication impairments who are interested in taking part in research.
University College London offers the opportunity to become part of their research registry, which enables researchers to offer participants the opportunity to take part in research studies or to hear about the results of ongoing research studies.
What will taking part involve?
Participants will be offered the opportunity to be on the research registry, which is a network of individuals interested in hearing about or taking part in research.
Participants will be offered the opportunity to take part in relevant research studies as and when they arise. They will also be offered the opportunity to take part in work to shape research.
Participants will be kept up to date with research through newsletters.
Members of the registry do not have to take part in research. Research participation is voluntary and participants will be asked to provide informed consent for each study. All studies will have ethical approval.
Who can take part?
The registry is for people with a language impairment as a result of a stroke or brain injury.
We aren’t able to accept people with a neurodegenerative disease e.g. dementia, parkinson's, motor neuron disease or a history of significant drug or alcohol abuse
It doesn’t matter where you live but anyone a significant distance from London or Reading will need to have access to the internet for online sessions.
University College London are particularly interested in recruiting participants with severe language impairments who may not have access to participation opportunities.
We are also particularly interested in people with language comprehension impairments, including people able to speak fluently but without a lot of content to their speech or rely on overusing very generic words like "thing", "that one".
What will you get from taking part?
Many participants enjoy participating in research for interest and for a challenge. People often get improved understanding about the nature of their communication impairment and a sense of well-being for their contribution to wider knowledge.
Where possible, participants are offered a financial thank you, e.g. a voucher, for their participation. This is not possible for all studies and any financial benefits are made clear during the information session.
Expenses are paid where participants are required to travel to the University of other sites to take part in a study.
How to register your interest and find out more
If you would like to hear more from us, then please fill in this form.
The form will work on a phone as well as a tablet or computer.
The form expresses interest in hearing more about the research registry. It does not sign people up to the registry - this must be done with a researcher later.
Once you press submit, the form will be sent to the University College London research team. The research team will then contact you and discuss the registry in full.
If you still wish to participate and if you are able to provide informed consent, then you will be able to sign up to the registry.
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.
Taking part in clinical trials can support research to:
- Stop strokes from happening.
- Treat strokes.
- Support stroke survivors and their families 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.
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.