Roland – Cohort studies

Roland has a rare form of motor neurone disease (MND) called progressive muscular atrophy. He is part of a study using blood samples, scans and other tests to improve the diagnosis and understanding of MND. He has also agreed to donate his brain to a brain bank.

Roland has had a rare form of motor neurone disease (MND) called progressive muscular atrophy for about 11 years. He was diagnosed in 1999. He has taken part in many research studies at various NHS specialist centres. It seems obvious to him to take part, because it may help him and even if it does not it may help others in future. Only one study was a really unpleasant experience, as it involved having a tube down his nose, but he was impressed that the consultant running the research had tried out the procedure on himself first. He also withdrew from another research project which involved drinking a particular fruit juice, which tasted so horrible he could not continue.

The study Roland is currently involved in is a 5-year study which involves giving regular blood samples every 6 months, as well as taking part in MRI scans and various tests of brain function such as an eye test. The study aims to look for biomarkers – particular characteristics of the samples – which can help explain why the disease progresses differently in different groups of people, and may also help provide a better diagnostic test for MND. It’s not too difficult for him to get there, and he spends 4–5 hours there for each research visit. Just recently he has found it more difficult to get up onto the scanner table, because of problems moving his arms and legs, but the staff help him.

Some people in the study are also giving regular spinal fluid samples by having a lumbar puncture. Roland has had a bad experience with a lumbar puncture in the past, when he felt quite panicky and felt staff were not communicating with him properly. So he opted not to have the lumbar punctures in this research project, and has been told his data will still be valuable.

He is hugely impressed with the dedication and manner of the staff involved, and the way they keep him informed of progress with the study. He finds it really interesting to chat with them while the tests are being conducted. He has encouraged several of his friends to become involved as healthy volunteers, to act as controls for the study. He has also agreed when he dies to donate his brain to a brain bank for research into neurological conditions. He is not religious and cannot see why he should worry about his brain being used for research. However, Roland found the information and questionnaire he had to fill in were worded in very complex medical jargon, which neither he nor his consultant neurologist found easy to understand. This contrast with all his other research experiences, where he thinks things have been very well explained.

Interview conducted in 2010.

Roland is impressed with the researchers he sees for a study on motor neurone disease (MND). He admire[s] them for their work on a soul-destroying illness.

Age at interview 61

Gender Male

Age at diagnosis 50

Yes, yes. I mean it’s-. Whenever I go for my six monthly- not check-up but research, if there’s anything that’s cropped up or any problems that have cropped up, issues things I might think I don’t understand, I make sure they’re asked at the session, at the research session. And I haven’t said this before, but it takes the best part of a day. it’s probably, I don’t know, four or five hours. And it also helps pass the time if one can have a discussion about my own PMA or just, you know, MND in general. And the doctors are very enthusiastic, and I have asked them on occasion why they carry on working on a disease which is incurable and debilitating. And it seems to be a, it seems to me to be quite a negative- not negative, that’s the wrong word but soul-destroying illness to be involved with, because in effect they can’t do anything. All they can do is diagnose you and even that can take six months, and that’s partly why the [biomarking] study is hopefully going to provide some quicker means of diagnosing MND. Because the quicker the disease is diagnosed, the quicker people can be put onto riluzole, which is the only drug can help people with MND.

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Compared to the awful paperwork for brain donation, Roland found the information leaflet about a biomarker study easy to understand.

Age at interview 61

Gender Male

Age at diagnosis 50

I have donated my brain to a brain bank in [county]. That’s- was surprisingly quite difficult to manage. Apparently, it is useful, or will be useful, for my brain to be donated, but the – just to be a bit negative – the paperwork involved was awful. And it was written in, well, by – let’s be rude – by, if you like, a PhD student who put everything in medical terms, and I didn’t have a clue as to what many of the questions meant. And I took it along to my consultant neurologist, and he took one look and he couldn’t understand it either. Anyway we got a simplified form out of that and
And that contrasts with your experience of the [biomarker study] study?

Oh indeed, yes, and any other study I’ve taken part in. They’ve always been straightforward and easy to understand, and I mean this isn’t a research project and it’s just a matter of me donating my brain, but it’s speaking the obvious to say that if you can’t fill the form in, then what use is donating your brain? Well, you’ve got to make life easy for people.

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