Dear Greg,
Can I suggest that you talk to existing registry staff first? The UK has one of the world's longest running cancer registry programmes, and I know they have been asked about other diseases as well.
I have recently started doing some cancer registry work in England, and I suspect some of the issues will be transferable. Happy to have a chat - drop me an email and we can arrange to talk.
Best Wishes,
Matt
Cons. Clin. Oncologist, Charing Cross Hospital, London.
Clinical Lead for QA at NCRS
Sent from my BlackBerry® wireless device
-----Original Message-----
From: EVIDENCE-BASED-HEALTH automatic digest system <[log in to unmask]>
Sender: "Evidence based health (EBH)" <[log in to unmask]>
Date: Wed, 6 Nov 2013 00:06:50
To: <[log in to unmask]>
Reply-To: "Evidence based health (EBH)" <[log in to unmask]>
Subject: EVIDENCE-BASED-HEALTH Digest - 4 Nov 2013 to 5 Nov 2013 (#2013-240)
There are 2 messages totaling 519 lines in this issue.
Topics of the day:
1. establishing a registry study. (2)
----------------------------------------------------------------------
Date: Tue, 5 Nov 2013 16:47:57 +0000
From: Greg Fell <[log in to unmask]>
Subject: establishing a registry study.
does anyone out there have any thoughs on / experience of / knowledge of key literature on the establishment of a registry
in Bradford we are in the (very) early stages of considering a registry study around diabetes care....
There is lots of scoping and exploratory work to be done - geograhy, scope, primary initial analytic questions, potential for embedded studies etc etc.....
I havent yet done my own homework, ......and will defo do so....but before I start I want to get a sense of how others have done the same bits of homework so as I can not reinvent wheels uneccessarily.....hence seeking advice of those that have trodden down this path in any clinical area......
two qs...
1) is there a paper you are aware of, or set of distilled information that will enable us to learn lessons early from those that have trodden this path.....
2) also at some point we will def need to do some form of literature search addressing the type of questions that Ethics Cmttees invariably ask ... (which I dont know what they will be in advance....but will be concerned I guess with IG issues and with ensuring that said study provides patient benefit).....are you aware of any distilled literature on this matter
Thanks in anticipation of any advice
Greg
Greg Fell
Consultant in Public Health
Tel: 01274 43600
5th Floor, Jacob's Well, Nelson Street, Bradford, BD1 5RW
City of Bradford Metropolitan District Council
Public Health Department
------------------------------
Date: Tue, 5 Nov 2013 18:41:42 -0500
From: Glyn Elwyn <[log in to unmask]>
Subject: Re: establishing a registry study.
At risk of being out of date - perhaps.
Diabet Med.<http://www.ncbi.nlm.nih.gov/pubmed/?term=elwyn+g+diabetes+registers#>
1998
Nov;15 Suppl 3:S44-8.
District diabetes registers: more trouble than they're worth?
Elwyn GJ<http://www.ncbi.nlm.nih.gov/pubmed?term=Elwyn%20GJ%5BAuthor%5D&cauthor=true&cauthor_uid=9829769>
, Vaughan NJ<http://www.ncbi.nlm.nih.gov/pubmed?term=Vaughan%20NJ%5BAuthor%5D&cauthor=true&cauthor_uid=9829769>
, Stott NC<http://www.ncbi.nlm.nih.gov/pubmed?term=Stott%20NC%5BAuthor%5D&cauthor=true&cauthor_uid=9829769>
.
Source
School of Postgraduate Medical Studies and Department of General Practice,
University of Wales College of Medicine, Health Park, Cardiff, UK.
[log in to unmask]
Abstract
Many areas in the UK are developing district-based diabetic registers with
the anticipation that this will facilitate the call and recall of patients
for regular reviews and thereby improve their quality of care, as well as
provide data for many other uses, such as local healthcare planning and
epidemiological research. But there are a clutch of unanswered questions
which need attention. The ethical issues surrounding the consent and
confidentiality of data on individuals are not resolved. There are
practical problems which impede the collection and maintenance of complex
data sets, especially if they are to include biomedical fields, and as yet
no cost-effectiveness research which informs this debate. The argument that
district registers may be the best way to demonstrate comprehensive
diabetes services
must not override two important concerns: firstly, where should the
responsibility lie for monitoring silently damaging chronic illnesses--with
patients, practices or districts, or all three? Secondly, if district level
registers do become the accepted tools, let us not ignore the missing data
field--that the quality of diabetic care is dependent more on the
patient-doctor relationship than we want to acknowledge, or measure,
however efficient our system. We conclude by observing that rudimentary
registers are arriving in many areas, but the question remains--will
diabetes registers aid the delivery of a high quality service for
diabetes across
the primary/secondary care interface? Truthfully, it is just too early to
tell, and perhaps too late to ask?
Glyn Elwyn <http://www.glynelwyn.com> *URL*
[log in to unmask] *Email*
@glynelwyn *T**witter*
glynelwyn *Sk**ype*
+1-603-646-2295 *Desk*
+1-603-729-6694 *Cell*
+1-603-646-2553 * Robin Paradis Montibello*
On 5 November 2013 11:47, Greg Fell <[log in to unmask]> wrote:
>
>
> does anyone out there have any thoughs on / experience of / knowledge of
> key literature on the establishment of a registry
>
> in Bradford we are in the (very) early stages of considering a registry
> study around diabetes care....
>
> There is lots of scoping and exploratory work to be done - geograhy,
> scope, primary initial analytic questions, potential for embedded studies
> etc etc.....
>
> I havent yet done my own homework, ......and will defo do so....but before
> I start I want to get a sense of how others have done the same bits of
> homework so as I can not reinvent wheels uneccessarily.....hence seeking
> advice of those that have trodden down this path in any clinical area......
>
> two qs...
>
> 1) is there a paper you are aware of, or set of distilled information
> that will enable us to learn lessons early from those that have trodden
> this path.....
>
> 2) also at some point we will def need to do some form of literature
> search addressing the type of questions that Ethics Cmttees invariably ask
> ... (which I dont know what they will be in advance....but will be
> concerned I guess with IG issues and with ensuring that said study provides
> patient benefit).....are you aware of any distilled literature on this
> matter
>
> Thanks in anticipation of any advice
>
>
> Greg
>
>
> *Greg Fell*
>
> *Consultant in Public Health*
>
>
>
> Tel: 01274 43600
> 5th Floor, Jacob's Well, Nelson Street, Bradford, BD1 5RW
>
>
>
> *City of Bradford Metropolitan District Council*
> * Public Health Department*
>
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End of EVIDENCE-BASED-HEALTH Digest - 4 Nov 2013 to 5 Nov 2013 (#2013-240)
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