Alastair Denniston – Birdshot Biobank and Database

Alastair Denniston – Birdshot Biobank and Database


Brilliant thank you Julian, great to hear again of the work at
Fight for Sight that are doing so well and I’m going to talk very briefly, just introducing the Birdshot
biobank and database. This is not a research project per se. Unlike the 3 talks that we are going to have after me it’s providing a resource for future research projects, so that we as a community can work together for. So one of the issues
with Birdshot is the people get spots or dots in the back the of eye. This is obviously a bad thing but the vision of the Biobank and the Databases actually start
joining the dots in a good way. Ok so if each of us here are a dot we
we need to start talking to each other. It’s been a theme already recurring
through the morning about communication and just as we’ve been
talking about it in a clinical context, it’s just as important that we as researchers,
rather than each of us sort of studying one patient with Birdshot or two patients
with Birdshot, that we are actually joining together and sharing the knowledge we
have and looking across the whole community and really that comes back to
what Phil was saying about the National Birdshot Research Network which is a
partnership of patients, clinicians scientists, funders, working
together. so the Birdshot Biobank but, what is it? Well it will be, a collection of samples
given by patients with Birdshot and separately, there is a database which is a collection of data given by patients with Birdshot. It’s focused nationally so within the
UK but the reach of it has potential to be european and worldwide in terms of
the the potential benefits that it will have. What are the principles? Well both of
them: that it is for the benefit of patients with Birdshot that it’s voluntary, you don’t have to be enrolled but obviously the reason it’s being set up is
because people have come and said you know this is important, this is something we need to do together. Research is collaborative with patient involvement
and that’s important for every stage of the process. It’s not for profit and data is not to be shared with insurance companies etc and
its established as a long-term resource for the Birdshot community so it’s not being set up so that we can do a project next year No the vision for this is very
much long-term and that’s when the value will really increase. So progress , wll Sue has already been mentioned and had a great write-up which she deserves
from Phil and we’re very grateful to BUS for funding Sue for three days a
week and she’s been doing immense work and part of that work has been in drafting the
governance documents and operating procedures. It is one of those areas where it seems like a no-brainer, of course we should work together and have this kind
of national database and national biobank but actually trying to get through all
the framework with the ethics approval etc and institutions involves just
unbelievably hard work. A selected safe host institution which can hold the
samples has been identified. So that’s the biobank. In terms of the database again this received joint funding
from Fight or Sight and from BUS which is fantastic again couldn’t be done without
this is an NHS web based application so secure, has the same securities as all the NHS online databases. It’s constructed in Birmingham with over 90,000 lines of code with nearly a thousand
possible patient scenarios. It is extremelynscalable and extensible Advanced search functions and it’s
fully secure so that sites from around the UK can upload anonymised data securely and then it can then build reports to help us understand
what’s going on. This is just an example of Bart Simpson’s uveitis entry. He gave
permission for this to be shared with you and this is what it looks like. So
we’ve tested this locally in Birmingham but it’s not yet been rolled out further than that. So the next
steps so we’re sorting out what’s called the data controller, then the
ethics the drafts are nearly complete and Sue’s aiming to submit those in the next month and then on to further local tests and then there’s training both locally and on the various sites that
would be involved. We believe that the ethics committee should be able to
review of by February 2016 and then we’re aiming for recruitment in April
2016. That’s the plan OK, so sometimes interruptions happen but that’s what we’re aiming for. So what can you do? The most of all things is to complete an expression of interest form and these are available to fill in, outside
so during one of their coffee breaks or lunch and keep watching the website for
information for things like recruitment dates etc. So
sorry for being brief but I am very happy to answer questions this. Also Graham has
put together a poster on the 100,000 Genomes project and that may be relevant as well.

Danny Hutson

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