Taking part in medical research

WrightA

Registered User
May 16, 2016
1
0
I am 45 and have had previous family members whom have passed away with Alzheimer's,all early onset(around aged 55 of diagnosis). My grandmother,her sister and my own mother. It appears to pass down through the female line and as I have 3 daughters and a granddaughter you can imagine my concern not just for myself but future lineage. I would be interested in taking part in any research that may be looking at a link. I spoke with my doctor a few years ago but he poo-pooed the idea and told me to come back when I thought I might have it,by which time it could be too late.
 

Kevinl

Registered User
Aug 24, 2013
6,053
0
Salford
Hi WrightA, welcome to TP
If you're looking to go into clinical research trials then see the factsheet on the link below. I would say though that many of the trials are none interventional so if they find something suspicious they won't (necessarily) alert you or your GP.
I looked at joining one for heart disease as there is a long history of heart disease in my family (both sides) and was told that if they did spot something they wouldn't do or say anything as that would invalidate the research, likewise any drug trials 50% of the control group would be given a placebo.
Like you my GP seemed to have a strange attitude to taking part, he didn't seem to like the idea, I don't know if he liked the idea of me getting some sort of medical treatment that he wouldn't be aware of was the impression I got.
K

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=949
 

Chrismitch

Registered User
Jun 23, 2011
127
0
I am 45 and have had previous family members whom have passed away with Alzheimer's,all early onset(around aged 55 of diagnosis). My grandmother,her sister and my own mother. It appears to pass down through the female line and as I have 3 daughters and a granddaughter you can imagine my concern not just for myself but future lineage. I would be interested in taking part in any research that may be looking at a link. I spoke with my doctor a few years ago but he poo-pooed the idea and told me to come back when I thought I might have it,by which time it could be too late.

You can find out whether you have the gene that makes developing AD highly likely. Ask your gp to refer you to a neurologist.
But then what? The study being carried out in Oz looks promising but I don't think there's a similar study anywhere else.


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BeardyD

Registered User
Jan 19, 2016
89
0
Both my wife and myself signed up for Brains for Dementia Research as they can accept some people without dementia who are over 65. Someone comes every year to do a short assessment and is willing to chat about the latest thinking of the research teams.

Join Dementia Research is also very good. They invite you to take part in research and you can say yes or no. If you are invited to take part in any interventional research make sure you know what is involved, there are (in my opinion) a few drugs looking for something to cure: if it doesn't cure cancer let's try arthritis, if still doesn't work try Alzheimer's.

What matches you most closely is the research done by University College London. They have an excellent on-line course hosted at FutureLearn https://www.futurelearn.com/courses/faces-of-dementia which describes the research done with someone in your position. It's free and the next one starts on 27th February, the first week covers Familial Alzheimer's. It might be worth contacting them directly.

Please keep us up-to-date with any progress you make.