Here's an easy PubMed search you can copy and paste. It's not perfect but it does pop up some interesting citations
Establish*[ti] AND ( registry[ti] OR registries[ti] OR registries[majr])
Helena
Helena M. VonVille, MLS, MPH
Library Director
University of Texas School of Public Health
Houston, TX
[log in to unmask]<mailto:[log in to unmask]>
713-500-9131
713-500-9125 (fax)
________________________________________
From: Evidence based health (EBH) [[log in to unmask]] On Behalf Of Glyn Elwyn [[log in to unmask]]
Sent: Tuesday, November 05, 2013 5:41 PM
To: [log in to unmask]
Subject: Re: establishing a registry study.
At risk of being out of date - perhaps.
Diabet Med.<https://urldefense.proofpoint.com/v1/url?u=http://www.ncbi.nlm.nih.gov/pubmed/?term%3Delwyn%2Bg%2Bdiabetes%2Bregisters%23&k=yYSsEqip9%2FcIjLHUhVwIqA%3D%3D%0A&r=aulhik0ZRYTDnJlvneqGiao0yCNLFiyfQU48HWBJa14%3D%0A&m=TjfixPA1YfRCeXEw15e93K1vZ6Y2Wq2LBrSiHh4eEoQ%3D%0A&s=43c2a512a90a2f2628ea9d5d5dd0c5848504567874ab10ed186fdc59193327e2> 1998 Nov;15 Suppl 3:S44-8.
District diabetes registers: more trouble than they're worth?
Elwyn GJ<https://urldefense.proofpoint.com/v1/url?u=http://www.ncbi.nlm.nih.gov/pubmed?term%3DElwyn%2520GJ%255BAuthor%255D%26cauthor%3Dtrue%26cauthor_uid%3D9829769&k=yYSsEqip9%2FcIjLHUhVwIqA%3D%3D%0A&r=aulhik0ZRYTDnJlvneqGiao0yCNLFiyfQU48HWBJa14%3D%0A&m=TjfixPA1YfRCeXEw15e93K1vZ6Y2Wq2LBrSiHh4eEoQ%3D%0A&s=e470c22473cda901c47f46cd27ac62ee5b0d17aeb58fc7a51c76b7605c622b4e>, Vaughan NJ<https://urldefense.proofpoint.com/v1/url?u=http://www.ncbi.nlm.nih.gov/pubmed?term%3DVaughan%2520NJ%255BAuthor%255D%26cauthor%3Dtrue%26cauthor_uid%3D9829769&k=yYSsEqip9%2FcIjLHUhVwIqA%3D%3D%0A&r=aulhik0ZRYTDnJlvneqGiao0yCNLFiyfQU48HWBJa14%3D%0A&m=TjfixPA1YfRCeXEw15e93K1vZ6Y2Wq2LBrSiHh4eEoQ%3D%0A&s=db6d392956dbcb031135565229bcc8bf0d5612e5c7532d22b70a02e6703875f5>, Stott NC<https://urldefense.proofpoint.com/v1/url?u=http://www.ncbi.nlm.nih.gov/pubmed?term%3DStott%2520NC%255BAuthor%255D%26cauthor%3Dtrue%26cauthor_uid%3D9829769&k=yYSsEqip9%2FcIjLHUhVwIqA%3D%3D%0A&r=aulhik0ZRYTDnJlvneqGiao0yCNLFiyfQU48HWBJa14%3D%0A&m=TjfixPA1YfRCeXEw15e93K1vZ6Y2Wq2LBrSiHh4eEoQ%3D%0A&s=307d2f23a3cec5e5820613d341c7c9860c5b0f4de33b71771442e53f313ffc41>.
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]<mailto:[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 rudimentaryregisters 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<https://urldefense.proofpoint.com/v1/url?u=http://www.glynelwyn.com&k=yYSsEqip9%2FcIjLHUhVwIqA%3D%3D%0A&r=aulhik0ZRYTDnJlvneqGiao0yCNLFiyfQU48HWBJa14%3D%0A&m=TjfixPA1YfRCeXEw15e93K1vZ6Y2Wq2LBrSiHh4eEoQ%3D%0A&s=48fe51571c79d73f34039320bbd3467dfc5c9ab5d30fadbcf6a7584f3cd0912b> URL
[log in to unmask]<mailto:[log in to unmask]> Email
@glynelwyn Twitter
glynelwyn Skype
+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]<mailto:[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
|