Can I still join and be part of the study?
If you are a first- or second-degree relative of someone living with MS and would like to be considered in the study, please do contact us directly. Information can be found under the Get in Touch page.
Will I be able to follow study progress online?
Yes. Study progress information will be regularly updated on this website under the Study Updates page. Participants are also welcome to contact the study team directly at any time during the study for additional updates.
What will happen to me if I take part?
If you take part, you will first be asked to complete a set of online questionnaires which will take approximately 30 min to complete. In these questionnaires you will be asked to give information about:
- Your ethnicity, age, education levels, profession, etc.
- Your medical history
- Any medication you take
- Your family history
- Your mental health and mood
- Your lifestyle choices
- Your physical abilities
We will then also ask you to complete a set of online cognitive tasks assessing your memory, attention, ability to process information, spatial awareness and more. This will take approximately 45 min to complete.
Once you have finished, this will conclude your part taking in phase 1 of the study. You will only be re-contacted for phase 2 of the study if your results from the questionnaire and cognitive tasks are of interest.
For phase 2 of the study, we would do some further testing which will include re-consenting and an in-person hospital visit for an MRI scan at King’s College London and a blood test at Imperial College Healthcare NHS Trust.
We will repeat phase 1 of the study a year later, in which case you will be re-contacted to perform the questionnaires and cognitive tasks once more to assess whether there have been any changes in your cognitive and motor function.
What should I do if I no longer want to participate in the study?
You are free to withdraw at any time without giving a reason, but we will keep information about you that we already have as some research using your data may have already taken place and this cannot be undone. If you would like to withdraw, please contact someone from the study team directly.
What are the benefits of taking part in our study?
We cannot promise that the study will help you personally, but the information we obtain will help improve the future diagnosis, care and treatment of people living with MS and other neurological conditions. However, the information you provide us with could also help inform your own increased risk of developing MS.
What are the possible disadvantages and risks of taking part in our study?
We expect no clinical risks to participants. However, there is some discomfort associated with blood sample donations. We would only be taking 12 teaspoons (60ml) of blood from each participant so we would not expect you to feel any side effects from the blood sample donation.
MRI scans are known to be safe: they do not involve ionising radiation and have no known hazards to health. However, they do involve a strong magnetic field so patients with certain mechanical or electronic devices cannot be scanned with MRI (particularly pacemakers, certain artificial heart valves or neurostimulators). Before you go into the scanner, we will ask questions about your medical history to check that it is safe for you to enter the scanner. We are using a closed MRI scanner which is usually preferred by patients that feel claustrophobic.
An assessment of the MRI scans will be performed by a neuroradiologist for any incidental findings. If these occur it will be reported to your General Practitioner (GP), the study Chief Investigator and an NHS referral will be made if necessary. In the event of an abnormal MRI scan, one of the study consultants will contact you directly and provide you with support, including contacting your GP to plan further management.
What happens if new information becomes available?
Sometimes during a study new information becomes available that may be important. If any new information becomes available during the study, we will notify you and the team can discuss with you if you wish to continue the study.
What happens when the research study stops?
The study will last three years. Any findings from the study will be communicated on this website, as well as appropriate research journals and medical conferences.