Your participation in research studies can support research to:
- Stop strokes from happening.
- Treat strokes.
- Support people to rebuild their lives.
Taking part in research studies can support research to stop strokes from happening, treat strokes and support people to rebuild their lives.
- I want to work together with researchers to shape how research and studies look: get involved with Stroke Voices for Research.
- I'm a researcher: find out how to recruit people affected by stroke to your research study.
What are research studies and clinical trials?
Research studies are how researchers explore answers to their research questions. They use the results of these to test and inform their ideas for benefitting poeple affected by stroke.
Every study is different. It can involve anything from filling in a questionnaire to testing a new rehabilitation method over several weeks. They might test new medication, technology, or ways of doing things (such as speech therapy).
Clinical trials are a type of study that tests whether potential new treatments are effective and safe. They help researchers understand what these look like in real life, their safety and impact on patients and how they compare to other alternatives.
We have produced the Clinical Trials and Stroke Booklet to explain more about clinical trials and answer questions you might have about taking part. This was produced with the NIHR Clinical Research Network.
If you have aphasia or trouble understanding written text, download our accessible version.
How can you take part?
You can volunteer to take part in research studies and clinical trials. Your participation will allow research teams to understand the effect of new approaches and help them to shape new ways of supporting people affected by stroke.
If you have been affected by stroke in any way you could be eligible to sign up for one of the requests accessible by clicking the button below and contribute to research working to rebuild lives.
Each request has a summary of who they're looking for and what it involves, as well as a full Patient Information Sheet. We reccommend reading this thoroughly before deciding to take part. If you have any questions, please contact us at email@example.com.
Sign up to take part in research studies
These are requests from research teams in universities and hospitals for people to take part in studies and trials of new research ideas.
You will need to check the eligibility criteria to make sure you are able to sign up, then get in touch directly with the people mentioned in the advert. You can also ask them any questions about the specific study.
Requests are sent to the Stroke Association from external research institutions (e.g. universities and hospitals). We conduct checks on these but are not involved in their running. This means we can not comment on the detail of individual studies and have no affiliation with them.
Clinical Trials: Frequently asked questions
Participation is when you provide information to research and projects. This is used by research teams to inform and test their approaches.
You don't have the opportunity to shape how the information is used once you provide this, but should receive information about what the research team have done as a result.
If you are interested in collaborating with researchers to shape how projects look, you may be interested in research involvement with Stroke Voices for Research
Trials are designed very carefully to minimise any risks. However, the risks can never be completely eliminated, especially if very little is known about a certain treatment.
Many stroke survivors who take part in clinical trials say they feel a certain satisfaction that they are helping future stroke survivors to have better treatment and therefore have better future outcomes.
There is also the benefit of taking an active part in your own health care and gaining access to new research treatments before they are widely available.
All trials are different and the most important thing is that you are told by whoever is organising the study what the potential risks and side effects are.
Not everyone can take part in a clinical trial. You can be excluded for a number of reasons such as age, gender, type of stroke and other symptoms. You will therefore need to meet a set of conditions known as inclusion and exclusion criteria.
It is important to know that not all stroke survivors will receive a new treatment when they take part in a trial. Sometimes, trials need to compare a new treatment with an existing one and participants are randomly allocated to either treatment. This is called a randomised controlled trial.
Placebos are commonly used to eliminate any bias of results. A placebo is an inactive drug which has no treatment value and is given to a group of participants to compare another active drug’s effectiveness.
When taking part in a trial, you need to take into account that you may not receive the active drug, but the placebo instead.
There can be a huge range of trials. These range from a simple questionnaire which takes minutes to complete to a large clinical study which may take place over a number of weeks, maybe months or even years.
Some past stroke clinical trials have looked at:
- The risk factors which can cause a stroke, e.g. smoking, high blood pressure and high cholesterol.
- Formulating a universal test (the FAST test) to recognise people who have had a stroke to enable them to get to hospital as soon as possible.
- The use of clot-busting drugs (thrombolysis) to minimise the damage caused by stroke.
- Improving mobility after stroke using Functional Electrical Stimulation (FES) to improve hand function and grip.
A researcher cannot enter you into a clinical trial without your agreement or consent. For you to give this consent, the researchers must explain the aims, treatment, protocol, possible risks and benefits so that you are fully informed of what you are agreeing to.
It is your right to withdraw from a trial at any point for any reason, even if you have consented initially. You are under no obligation to continue.
All information will be kept confidential unless you give permission for it to be shared. Most research is published at some point and your results may be incorporated, but they will always be anonymous. Sometimes even the researchers won’t have access to the individual results.
This depends on what phase the clinical trial needs participants for. Some will reimburse for travel expenses but it is always best to check with the trial organisers.
Many people are involved in designing and organising clinical trials. These can include doctors and allied health professionals such as nurses, physiotherapists, occupational therapists and speech and language therapists.
Each trial needs to follow a strict protocol (or plan) which has been approved by an ethics committee and NHS research governance working groups.
Before any clinical trials are carried out, the research will have been reviewed by relevant experts in that field. They are known as a research governance working group within the NHS and are able to offer independent advice on the quality of the proposed research.
All trials need to be assessed by an independent Research Ethics Committee (REC) to ensure that participants are protected.
A research ethics committee safeguards the rights, safety, dignity and well-being of people participating in research. They review applications for trials and give an opinion about the proposed participant involvement and whether the research is ethical.
RECs are entirely independent of research sponsors, (the organisations funding and hosting the research) and investigators. This enables them to be completely unbiased in their judgement.
All researchers and their teams who will be carrying out the trials will have been trained to a high standard. They will have gone through regular accreditation so they know exactly what’s needed and allowed.
Clinical trials are carried out in phases. Each phase has a different purpose and helps the researchers answer different questions regarding safety, dosage and side effects.
This is the first stage of testing a treatment in a small group of people (20-80).
The treatment is given to a larger group of people (100-300) to evaluate its safety.
It’s now given to even larger groups of people (1,000 -3,000) to monitor side effects, safety and to collect more information.
The safety of the treatment continues to be monitored after it has got to market and approved for sale.
Research can make a real difference in the lives of people affected by stroke. It can find new ways and drive improvements in how we can stop stroke happening, treat and support people after stroke.
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.
Since the early 1990's, we've invested over £56 million in stroke research. Find out about how research funded by the Stroke Association has made a difference in the lives of people affected by stroke.
The Be Part of Research website lists studies that are looking for people to take part. You can search by condition and by location.
The website also has lots of information about taking part in research. This can help you to make an informed decision about taking part.