At Last! Medical Ethics Approval for Research Project Granted

by | Mar 18, 2015 | 6 comments

lab1Yesterday a bland email floated into my inbox and sat there for a few hours before I eventually opened it.  What it contained was the result of two years work by a well-known clinical researcher to gain approval for a small ‘proof of concept’ research project to investigate the phenomenon of why some patients need more frequent injections than others.   For two years the society and the team of researchers has had to convince the regional medical ethics committee that overseas the university where the project will take place, that every, and I mean every practical step has been taken to ensure that the human tissues that will be involved in the project will be accounted for the duration of the research.  At times it seemed that the requirements of the committee were unreasonable and although approval was denied just once every subsequent submission was returned with requests for more information, more names of responsible individuals, more clarification of procedures etc.  Well, anyway we’ve now got permission for the research to go ahead.

It’s over two years since we first asked for volunteers to put their names forward and now I will have to dig around the files in the office to find the list of participants.  The volunteer who was looking after the file has long disappeared into medical school but I’m sure it will be found.  I suppose it’s time to switch on the freezer that will be used to store the tissue samples – it’s over a year since we purchased it and everyday it has been a reminder that the project is yet to get under way.

It does seem like a lot of bureaucratic red tape but the ethics committee has to make sure that the tissue samstool-sample1ples are treated with due respect and are accounted for at all times.  This is because in the past, when research programs have been conducted, body parts and other items belonging to participants have gone missing or ended up in all manner of strange places.  Unscrupulous or careless researchers in the past has meant that strict controls are now in place to ensure that the dignity and respect of those involved in the research is observed.  And our little experiment is not different – even if the body tissues that we will be using are lowly stool samples.

Related Posts




  1. Catherine Troy

    Well done Martyn. I can’t believe how much time and effort you are putting into all these projects, while you are a sufferer of PA. I can only say Thank You so much from the bottom of my heart and keep up the good work. When I have my situation under control (self treating) I hope to be in a position to offer some help to the charity, which is doing a great job in raising awareness and bringing about change.

  2. Linda

    Well done Martyn that’s fab that the research project is going ahead, I’d be interested in taking part but maybe you have to be local? I read all your posts & the work you do is amazing to try & get better help & treatment for everyone.

  3. Andy Lucas

    Good news and thanks for your hard work Martyn, let’s hope we can find the answer to this conundrum

  4. Jo parker

    Excellent news
    Im sure i’ve registered but just to make sure: am happy to participate
    I find i am only at my best by injecting daily, any less often brings symptoms back within three weeks max!

  5. mo

    Well done! I believe this is hereditary in my family. What an I credible job you all do on our behalf. THANK YOU

  6. Jennie Mantle

    YYYYEEEEEEEEAAAAAAHHHHHHHHHHHHHH well done you, it must be such a relief for you to finally get somewhere. As others have said , thank you for all your hard work and I too offer myself for your research would love to take part. I’m currently injecting every other day at a cost of 53p per shot of hydroxo. it come from Germany. I don’t know what else to do , I just wish we could buy over the counter in UK.


Submit a Comment

Your email address will not be published. Required fields are marked *