9 questions you asked us about taking part in research
Deciding whether you want to take part in research is a deeply personal decision. We asked three MS researchers your questions about taking part in research.
1. Why should I take part in research?
Many people feel like taking part in research gives them a personal sense of direction and purpose.
And there are huge benefits for the wider MS community too.
Taking part in research means you are actively involved in advancing treatments for MS. All disease-modifying treatments (DMTs) available today only exist because of previous people’s generosity.
Depending on the type of research you take part in, you may also have more regular appointments. This could include seeing a clinician more frequently for check-ups, having more opportunities to ask questions to a highly specialised team, or receiving additional blood tests or MRI scans.
Research participants Lauren Forrester and Paul Griffin told us why they decided to take part.
2. What does taking part in research involve?
There are many different types of research you can take part in, from trialling a promising drug and completing a survey to testing a new exercise programme.
You could answer surveys about your MS from the comfort of your home on the UK MS Register. You could try out a new exercise programme or specific diet. Or you could give a sample of your blood or saliva for researchers to look at in the lab. Or you may be invited to attend a clinic for a trial appointment, where you complete cognitive tests and have an MRI scan.
Don’t forget – there will be plenty of opportunities to ask questions before you join a study or trial, so you can fully understand what’s involved.
Find out more about what it’s like to take part in research.
3. Will I have to take time off work?
Some studies might need you to visit a hospital or research site during the day. Usually they’ll pay travel expenses to allow for this.
But there are lots of studies you can take part in during your own time too. Like answering questionnaires or taking part in online exercise programmes.
4. Why is diversity important in MS research?
MS is a diverse condition. It can affect people differently depending on a number of circumstances, for example their age, gender and ethnic background. Unless research is able to adequately capture the diversity of the MS community, the treatments will not be good enough for all people living with MS.
For example, there are still gaps in our understanding of the biology of MS, how it progresses in different people, and how easily people can access the treatments and care they need.
If research doesn’t consider this diversity or include representation from across the whole MS community, we may miss important differences between people. This means research findings may not be relevant to everyone, and we risk developing treatments, support and care that work well for some people, but not for others.
5. How are participants kept safe?
Keeping research participants safe is the highest priority. That’s why all research is strictly regulated and reviewed by research ethics committees and other regulatory authorities. Everything is carefully scrutinised before a study begins and closely monitored throughout the project.
All risks are discussed before you even join a trial. We want to find out if a drug works, but we don’t want people to come to harm. That’s why safety is our top priority.
For clinical trials, participants are monitored regularly. This can include questionnaires, blood tests, MRI scans and other assessments. These appointments help researchers identify and manage any potential side effects as quickly as possible.
6. Why are there so many restrictions on who can take part?
All studies have criteria outlining who can and can’t take part to make sure the research is safe. And it means researchers can test the benefits of a treatment or lifestyle change as quickly and effectively as possible.
We know it can feel incredibly frustrating to want to take part in research but not be eligible. There are eligibility criteria for a number of reasons, including keeping vulnerable participants safe by avoiding dangerous drug interactions and unnecessary risks. And ensuring the data is as accurate as possible by reducing other factors that could affect the results. As all trials have different eligibility criteria, so keep an eye out for studies that may be the right fit.
7. How is my data stored?
All research carried out in the UK must follow strict data protection laws, meaning your information is legally protected.
Your data is stored securely and is only accessible to authorised members of the research team. Your data will be anonymised, which means it cannot be linked back to you.
You will receive more detailed information about how your data is collected, stored and used before deciding whether to take part in a study.
8. Can I change my mind if I don’t want to take part anymore?
Yes, you can withdraw from a study at any time. Just let the research team know. If you’re happy to, it’s helpful to let the researchers know why you’re leaving so they can improve the trial in the future.
9. Where can I find studies?
We know it can be quite difficult to find studies to take part in. Here are a few different ways you can find them:
- Speak to your neurologist, MS nurse, GP or physiotherapist. They can let you know if there are any local studies or clinical trials you might be eligible for.
- Find more information about being in a study on our website.
- Visit the Be Part of Research website. Here you can search for MS studies in the UK by area.
- Search for MS studies recruiting around the world on the ClinicalTrials.gov website
- Keep an eye on our news stories for information on the latest studies
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