Towards an endophenotype in multiple sclerosis
This study is recruiting people with MS who have brothers and/or sisters without MS, and people with MS who are twins (identical and non-identical) to explore the cause of MS, a multi-factorial disease. Twins may help the researchers understand the cause of disease and the influence of early environmental exposures; identical twins have the same genetic background and twins in general share the same early environment, which can be different when looking at non twins and unrelated individuals.
What will participants be asked to do?
If you decide to take part, you will be asked to contact your sibling(s) in order to see if they would be happy to take part in this study. If they are happy to take part, then the researchers would be able to see you either together or at separate times, at your convenience.
The researchers would take approximately three tablespoons (45ml) of your blood from a vein in your arm, which is likely to be at the same time as any other blood tests you might be having. Participants would be asked to provide a urine sample, a cheek swab and a saliva sample on the same day as having the blood test.
Who can take part?
The study is looking to recruit participants who have been diagnosed with multiple sclerosis and have a brother or sister who does not have MS and is able to take part in this research.
Who is conducting the research?
This research is being carried out by research doctors and scientists under the direction of Professor Gavin Giovannoni. Sections of this research are being carried out as part of PhD by Dr Dobson.
Who has reviewed this study?
Approval for this project has been granted by the East London Research Ethics Committee 2 (ref 10/H0704/62).
Interested?
If you would like to find out more about this study and would like to receive a participation information sheet, please contact either Dr Ruth Dobson (ruth.dobson@qmul.ac.uk, 020 7882 2282) or Ms Maria Espasandin (m.espasandin@qmul.ac.uk 020 7377 7000 ext. 3303) for further details. Please note that enquiring about participation does not commit you in any way
Similar work is going on elsewhere (pity these sorts of research studies can't link up – I suspect that most researchers still operate in silos as the focus is on producing published peer-reviewed academic research papers / gaining a PhD – rather than a concerted worldwide collaborative effort to crack this disease!): "To better understand how various types of risk factors contribute to MS, a team at Brigham & Women's Hospital in Boston MA is launching the "Genes and Environment in Multiple Sclerosis (GEMS) Study." They are enrolling people aged 18-50 who have a parent, child, or sibling who has been diagnosed with MS — people with MS can also enroll as long as they have a first-degree relative with MS. Subjects will be asked to provide a saliva DNA sample and to complete a 15-minute online survey; some subjects will also be asked for a blood sample and an MRI, but this is optional. Additional surveys will be conducted every 3 years, and the study will run for up to 20 years. The scope (up to 5000 subjects) and long duration of the study mean that lots of data will be collected for MS risk research. One of the goals of the study is to develop an MS "risk score" which could be used to help identify people with the highest risk of MS — who could then be given up-to-date advice about MS risk reduction. If you're interested in learning more about this study, you can contact the research coordinator, Irene Wood, at 617-264-5980 or at bwhmsstudy@partners.org."