eyesee

By davidc

An on-line test for medical research

This is a screenshot which I took this morning as I began an on-line test. My late Mum developed Parkinsons Disease in her late 70s (although she lived to 87) and one of my two brothers developed it in his early 60s (happily he's still alive although quite significantly affected by it). Parkinson's Disease is rarely hereditary but can occasionally run in families where there is a particular genetic defect (the GBA gene). My other brother and I have therefore enrolled in a research study (the "RAPSODI" study - not to be confused with a study of the same name about shoulder problems!) which is investigating potential genetic links to the condition. Its main aim is to develop new and more accurate ways to predict Parkinson’s years before any symptoms appear, and to develop a drug to stop Parkinson’s developing or progressing in those who have the gene variant.

On enrolment last year I had to fill in a long health questionnaire, provide a saliva specimen for genetic testing, take a smell test (that is to see how well I can smell things - not how badly I smell!!), and undertake an on-line computer-based test of my fine coordination and memory. Each year I have to repeat the health questionnaire and the computer tests, so that's what I was doing this morning. All in the interests of science!

You don't get any feedback on how well you did the tests but I think I did OK (although I needed to give my brain a rest after it as it's quite intense!). Regarding the genetic test, you were given the option of finding out the result or not. As there's currently no beneficial treatment to take if they do find the abnormal gene I chose not to know the result: even if the gene is present not all people will develop symptoms so I saw no point in knowing. Fortunately I'm still free of any symptoms of the disease - and hope to remain so!

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