GWAS study – please consider participation

Indeed it is important Marion and like you I hope it to be very successful as well. My thinking is that many doctors etc here in the UK would not be comfortable taking samples to send on because of rules and regs surrounding all of this even if a patient was to sign a consent form allowing them to do so. If the rules here change allowing this then to happen then think that attitudes would change pretty quickly as well from gp’s etc.

Hugs,

Gavin

Thanks for that Marion. Just thought I would mention this in case you didn’t know any of that. Hoping that things change soon so that any others from the UK will be able to partake in this.

Hugs,

Gavin

Marion,

I got in touch with Helen over this re people in the UK taking part in the study and Helen said that people in the UK will not be able to take part yet. She has written quite a bit about this in FB and AM and this is what she told me last week,

“I have posted about this several times and right now it’s not possible for UK patients to have their samples taken here and sent to the US because of the UK’s stringent Human Tissue Act (which came about because of the Alder Hey scandal, and caused the Human Tissue Authority also to be set up).

We are looking for ways round this and I’m in touch with Shahid Khan, John Bridgewater and a couple of others to see how we can participate and collaborate with the Mayo. Once we know how we can do this with ethical approval (might be that the samples have to be analysed here in the UK) then AMMF will certainly be sharing the details for everyone here who is interested in taking part.

Prof Valle will be subject to the Human Tissue Act too so, although he may well have expressed willingness to participate in the study, without jumping through endless hoops to obtain specific ethical approval, he cannot collect and send samples to the US.

So, hopefully soon we’ll have some definite news on Imperial, UCL (and maybe The Christie) being involved in helping patients to participate in this study, but at the moment patients in the UK cannot participate. “

Here is more on this from AMMF –

http://www.ammf.org.uk/2014/06/30/biosamples-cc-biobanks-the-international-cc-patient-registry/

Alder Hay is a hospital in the UK in LIverpool and there was a huge scandal there many years ago, here is more on it if you are interested –

http://en.wikipedia.org/wiki/Alder_Hey_organs_scandal

So hope that things will change in the future and that people from the UK will be able to take part in studies like this in the future.

Hugs,

Gavin

Thanks to all and hope that much good will come from this.

Gavin