hi everyone, just wondering if anyone has had a letter from the NHS inviting them to take part in a trial ?
apparently they are looking at the link between Afib and dementia and wether taking a DOAC early even if risk of stroke is low would help prevent early onset dementia.
I’m 57 female and my chads score is 1 , I know at some stage I’ll need to take one and under the trial I’ll be monitored.
I’m wondering what everyone’s thoughts on this is .
I would confirm with my GP this is a genuine request from the NHS before i gave out any details of my health and not from some private Co.
Was this from NHS England, Scotland or Wales? I’d check the validity of the named people on the letter.
Not seen anything but I do know there is research on that. After nearly twenty years on warfarin I hope to avoid the dreaded.
This is the way the medical profession can work towards finding 'cures' for conditions and disease, by conducting trials and yes I have seen this notification. I am too old at 80, being taking anticoags since 57 and thankfully I do not have dementia, forgetful yes at times, but still have all my faculties and if I was younger yes, I would do the trial and the more people that take part the better in my opinion.
in 2022 I was invited by letter to take part in a trial which involved having three yearly blood tests in order to detect cancer in any part of the body. I decided to take part and the third and last one taken this February detected cancer in either my breast or head or neck. I was quickly referred to my local breast clinic at the hospital and cancer has unfortunately been found in my breast and I am having surgery on the 23rd. No lumps can be felt and I feel perfectly well, without this blood test I would never I have known so it has been caught early and hopefully there will be a good outcome so I would recommend anyone to take part in any trial offered checking of course on the authenticity of the invitation.
I am sure it is a genuine request. For myself, I have enough worries with my heart to add yet more concert about my ageing brain!
Steve
I used to work for a pharmaceutical company and one of our drugs for rheumatoid arthritis was found to also help with psoriasis, Dapagliflozin for diabetes is now also used for heart failure so if you fit the criteria I would go for it. Many of us have been on anti co ags for years and if it protects our brains as well I'd go for it
thanks so much for all your replies, I’ll check with my GP and maybe even my cardiologist, I’m thinking if genuine it sounds like a good idea .
If you only want opinions, mine would be that anyone with AF should be on anticoagulants. To get them on the trial might be a good thing, unless they're using blind placebo control as well, in which case you might end up on a nothing pill.
So to answer momist 's query, which is of interest to me as well, you might have been allocated to receive a placebo in your trial (as happens in all blind trials)?
I don’t think there is a group which has the placebo , I think the groups are age related groups.
I’m satisfied I’m taking edoxaban for a number of reasons …
Who would want to play Russian roulette - not me. One of the first conversations I had with my surgery.
I was really just asking whether it was a blind trial, but from Shopgal67 's Reply, it seems not, which I suppose makes sense.
Re your mention of your personal situation with edoxaban and "Russian roulette", I think you will find some others do have genuine difficulties with anticoagulants and seek alternative options. Not so much playing "Russian roulette" as "being caught between a rock and a hard place".🤔
I know I would and possibly should need DOAC at some point, I’m nervous to take it but as you so rightly point out rock & hard place !! It’s the lesser of two evils, I worry about bleeding and the thought of a stroke is terrifying.
But I could also say the opposite ... "it's the greater of two evils".🤔
In late 2016 I suffered unexplained (medical term "spontaneous") acute bilateral subdural haematomas which fortunately were able to be treated conservatively (with 10 days of steroids) because the bleeding had ceased by the time of my diagnosis.
However, I live alone, and have been left with a realistic concern that if a similar bleed (the CT showed large deep pools of blood across both hemispheres of my brain ... "thunderbolt and lightening, very very frightening") occurred while I was taking (the later recommended and AF related) apixaban, then I might well become incapacitated before I could call for help. So, at 77, but with no comorbidities, my current decision is NOT to take a DOAC. But my decision is constantly under review.
There you go, a rock and a hard place.
I think your question is spot on because it mine is
One group will get the placebo unless something changes in their CHADVASC to make DOAC advisable or if not then when they reach 75.
Another group will start DOAC earlier than indicated..
I just happen to know which group I’m in / rightly or wrongly ..
I'm still confused ... I am 77 so I would know which medication I was receiving. Perhaps I'm not eligible for this trial anyway. See my reply just now to Shopgal67 above.
Sounds exactly the same , I’m thinking it’s worth signing up for .
AF and Increased Dementia Risk
Ablation (or any other) Trials in the UK
Feeling protective of our NHS!
NHS Referral 
Common cardiovascular drugs linked to lower risk of dementia 
