Taking part in medical research

Discussion in 'Researchers, students and professionals' started by WrightA, May 16, 2016.

  1. WrightA

    WrightA Registered User

    May 16, 2016
    1
    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.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,570
    Merseyside
    Welcome to TP :)
    Why not ask a different GP at your practice?
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    60,141
    Female
    Dundee
  4. donstoll3

    donstoll3 Registered User

    Jun 14, 2013
    11
    East Sussex, UK
    Brains for dementia research

    My Dad has AD - he and Mum agreed to take part tin Brains for dementia research in Oxford.
     
  5. donstoll3

    donstoll3 Registered User

    Jun 14, 2013
    11
    East Sussex, UK
  6. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,774
    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
     
  7. Chrismitch

    Chrismitch Registered User

    Jun 23, 2011
    127
    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.


    Sent from my iPhone using Talking Point
     
  8. BeardyD

    BeardyD Registered User

    Jan 19, 2016
    89
    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.
     

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