Private healthcare provider inviting me to clinical trial - scam?

[SitsThere]

Hello, Talking Point. My mum died with mixed dementia more than three years ago, and I haven't been here for a long time. However, something happened today which struck me as an indication that our fear of "inherited" dementia could be used to exploit us and I am wondering what other folk here think. Specifically, among all the unwanted stuff that pops up on my Facebook feed now that I'm past 70 (Funeral plans, residential care homes, ludicrous mutton-dressed-as-lamb clothing, etc etc etc) today for the first time I got an invitation to contact an organisation called Re:cognitionhealth.com to "take part in clinical research" and "help find a cure for Alzheimer's".

I've been taking part in a highly reputable university-based research program almost since mum died and like all of us, I'm very much inclined to assist with research in any way I can. But when I read through the detail of this invitation, it was clear that the first step would be a genetic assessment of the risk level of developing dementia, subject to which you'd be ask to trial some treatments. And this is a private organisation specialising in dementia treatments - a business which profits from offering hope to anxious or confused people. So it would be very much in their interest for them to tell anyone taking the test that they have an increased risk of developing dementia.

All of which means that I wonder how meaningful it would be to take part or accept their invitation to talk to one of their consultants. Of course, since mum died with the condition, I would very much like to know what my risk is, but I'm fairly sure that if I was determined to find out, I could do that through commercial DNA testing. On the other hand, if what these guys are doing is genuine research, I would like to be helpful. Does anyone here have any thoughts or advice or experience on this ?

 

[charlie10]

Hi @SitsThere ....I'm sorry you lost your mum to this horrible condition, what a generous person you are to help with research. With regard to this new company, maybe you could contact the Alzheimer Society helpline? If it is suspicious they might already have it on their radar. Also CAB might be able to help you investigate its scientific standing......I would certainly make sure I understood their objectives before I offered them any help.

Another thought is to ask the university people if they know of it.....

 

[la lucia]

Hello, Talking Point. My mum died with mixed dementia more than three years ago, and I haven't been here for a long time. However, something happened today which struck me as an indication that our fear of "inherited" dementia could be used to exploit us and I am wondering what other folk here think. Specifically, among all the unwanted stuff that pops up on my Facebook feed now that I'm past 70 (Funeral plans, residential care homes, ludicrous mutton-dressed-as-lamb clothing, etc etc etc) today for the first time I got an invitation to contact an organisation called Re:cognitionhealth.com to "take part in clinical research" and "help find a cure for Alzheimer's".

I've been taking part in a highly reputable university-based research program almost since mum died and like all of us, I'm very much inclined to assist with research in any way I can. But when I read through the detail of this invitation, it was clear that the first step would be a genetic assessment of the risk level of developing dementia, subject to which you'd be ask to trial some treatments. And this is a private organisation specialising in dementia treatments - a business which profits from offering hope to anxious or confused people. So it would be very much in their interest for them to tell anyone taking the test that they have an increased risk of developing dementia.

All of which means that I wonder how meaningful it would be to take part or accept their invitation to talk to one of their consultants. Of course, since mum died with the condition, I would very much like to know what my risk is, but I'm fairly sure that if I was determined to find out, I could do that through commercial DNA testing. On the other hand, if what these guys are doing is genuine research, I would like to be helpful. Does anyone here have any thoughts or advice or experience on this ?

It's a scam. Just like those ancestor dot coms they will retain rights to your genetic material. It's worth money to them. Plus it looks like they'll probably try to peddle some stuff.

The only research that's valid is like your university study or proper clinical trials run through NHS hospitals which are registered officially on a central register.

Maybe you can try tighten up your settings in Facebook to block certain types of adverts. You can also do it to some extent in Google settings too. Also, make sure you do regular cookie clearing and history clearing too.

It's getting out of hand which is why the EU data rules are definitely a baby step in the right direction. I hope the UK retains them.

 

[prodigal-son]

I don't agree with @la lucia that it's a scam, though certainly it depends on your attitude to commercial research and data privacy.

A quick trawl of Google Scholar shows that Re:Cognition Health is co-authoring papers in respectable journals alongside the NHS and universities, notably Plymouth. For instance, here's a randomised controlled trial (nothing to do with dementia), with Re:Cognition Health among the authors, plus a whole bunch of universities and NHS trusts. I'm not qualified to judge the quality of the science, but if they are doing clinical trials they'll have to stick to the rules.

I don't like the idea of private medicine (possibly because I can't afford it) and I especially don't like the fact that the NHS is being privatised by stealth. I also agree that they'll probably do whatever they like with your DNA, and I'm wary of ancestry DNA testing. But someone has to pay for dementia research.

So you pays your money (or not) and you takes your choice. Please keep us posted!