Biobanking

Ian - Interview 16

Male
Age at interview: 54
Age at diagnosis: 51

Brief outline: Ian was diagnosed with Motor Neurone Disease just over two years ago, in 2008. He has taken part in several research studies, including a biobank study which aims to improve the diagnosis and understanding of MND.

Background: Ian is an insurance consultant. He is married with two children aged 21 and 17. Ethnic background/nationality' White English.

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Ian was diagnosed with Motor Neurone Disease (MND) in 2008, just over two years ago. After he was diagnosed he was referred to a university hospital clinic, where the staff are actively involved in a number of research projects. He was very impressed with the care, time and attention he was given, and also with their honesty about the fact that MND is poorly understood and the need for more research. He was very keen to help research in any way he could, provided it did not involve anything that would cause pain. 

 
Ian is currently taking part in a study which involves giving regular blood samples, as well as taking part in MRI scans and various tests of brain function. 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 diagnostic test for MND. Some people in the study are also giving spinal fluid samples through lumbar punctures, but Ian was able to opt out of this part of the study. His wife also volunteered as a healthy person to be part of the control group, against which samples from people with the condition can be compared. She was willing to have a go at the lumbar puncture, but in the end found it too painful so the team stopped the procedure immediately. 
 
Ian feels the staff have been exemplary in explaining the research and giving feedback, and he really appreciates the feeling that he is contributing as part of the team. He has been sent photographs of his MRI scans, and has been told about articles the researchers have written using his data. He has also volunteered for two interview studies (including this one) and feels he can trust the universities involved. There was just one study from which he withdrew, which was a postal questionnaire from university in another part of the country. He felt it was too impersonal, and feels happier giving his time to a research team that he has met face-to-face and built up a trusting relationship with.
 
He is a great supporter of all kinds of medical research, provided it is well regulated and does not involve unnecessary cruelty.
 

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