# DKA in pregnancy research - your input and support please



## Goher (Nov 9, 2017)

Researchers from the National Perinatal Epidemiology Unit, University of Oxford, are planning a research project looking at Diabetic Ketoacidosis (DKA) in people with diabetes during pregnancy. The team, lead by Prof. Marian Knight, really need input from people who have diabetes (any type) who have experience of pregnancy (with or without having DKA) who would be interested in supporting them with identifying the priorities for the study. Also, we would encourage your involvement throughout the process for designing and getting funding, the set-up and conduct of the study until it is completed and the results distributed to others - as you are happy to do. If you would be interested in supporting, please would you email me at: goher.ayman@npeu.ox.ac.uk. I will send further information about the study once I have it!


----------



## trophywench (Nov 9, 2017)

@Northerner - approved?  (sounds as if it ought to be, it has the right credentials LOL)


----------



## Goher (Nov 9, 2017)

trophywench said:


> @Northerner - approved?  (sounds as if it ought to be, it has the right credentials LOL)


Hi Jenny, I can absolutely understand your checking on my post. I promise I am a real person and I also happen to have diabetes, am a member/supporter of DUK for many years, and recently a member of their acute care CSG. I support the researchers in the NPEU at Oxford university too as a research facilitator. As you might tell, I'm a big advocate for research! I'm hoping there will be people who will be willing to be part of the research team for this project. The team at NPEU are an excellent bunch of people and value the opinions and experience the people affected by their research can bring to inform their work; it will help make it relevant and focussed to address the things we really think are important. I hope this helps with validating my post, and give people confidence to contact me if interested!


----------



## Northerner (Nov 10, 2017)

trophywench said:


> @Northerner - approved?  (sounds as if it ought to be, it has the right credentials LOL)


Yes, this has been approved. Please help @Goher if you can 

@Goher, normal protocol is to contact the administrators prior to posting a request, so we can ensure it is valid (sometimes marketing surveys, which aren't allowed, can disguise themselves as academic research).


----------



## Goher (Nov 10, 2017)

Thank you very much @Northerner. My apologies, I wasn't aware of the protocol but will follow from now. Thank you for your support and help with this. I hope to be able to bring to the forum as many opportunities as I can for people to get involved with research, not just as participants, but supporting as members of the research team. Many thanks


----------



## Northerner (Nov 10, 2017)

Goher said:


> Thank you very much @Northerner. My apologies, I wasn't aware of the protocol but will follow from now. Thank you for your support and help with this. I hope to be able to bring to the forum as many opportunities as I can for people to get involved with research, not just as participants, but supporting as members of the research team. Many thanks


No worries, I know it's not very obvious and we are hoping to highlight the protocols more in the near future


----------



## Goher (Nov 10, 2017)

I thought it may be useful to provide a link to further information about patient and public involvement (PPI) in research - this website will give an idea of what sorts of things people can expect to be involved in with the project I posted above, and how it works. This will be different to being one of the participants (being tested on - to put it VERY crudely!) http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/


----------



## trophywench (Nov 10, 2017)

Hee hee Goher - I've been almost 'fooled' like that - years ago I was invited to have a DEXA scan of my hips - via my GP surgery.  Well thought I - not a bad idea for a middle aged lady without any osteoporosis symptoms as far as she knows, can't hurt, can it?  So off I went.  Scan done, blood taken to see if I was Vit D deficient, all good.

Went back for the results - bit of bone thinning but completely commensurate with my age at the time, Vit D low so needed boosting and --- we want you to start taking these tablets.  Pardon?  Oh yes, it's a drug that's used to treat actual osteoporosis and what we want to know is, if people who haven't got it start taking it now, will it stop them getting it?

Err, no, I'll have to think about that before I decide and I'll let you know.  Asked a friend - a moderator on an Osteoporosis forum.  She said it's a horrible drug and even the people who have no choice and need to take it don't want to - cos of the awful side effects.  For one - Cannot have any dentistry while you're taking it since one of the side effects can be and often is necrosis of the jaw - amongst many other things!  Later my sis had to take it when her cancer spread to her bones, well it was terminal so if she could gain any relief for a while, of course it was worth it.  But hardly a substance I'd want to ingest 'just to see'.

Somebody does have to try things I appreciate - look at the Thalidomide disaster!  We aren't mice or any other lab animals.   But ..........


----------



## Goher (Nov 11, 2017)

Hi Jenny, you raise an important point. People must feel happy that they have all the facts they need to make an informed decision. There is a research framework and the principles of Good Clinical Practice which apply to research in the NHS. On top of this, studies in medications are governed by law. These are in place to protect the rights, safety and well-being of the participants and to make sure the study is credible and valid. You did exactly the thing I would hope anyone approached about research would do - take the time to think about it and discuss it with your family before making a decision for yourself. (I should point out that there are some studies where this process is different - for example, in research in emergency procedures - but there is also an ethical/regulatory review process for research studies where the issues raised by are checked to ensure they are absolutely needed and the benefits balanced against the risks.)


----------

