Data management logistic framework for the registry of CKD.QLD

Wang, Z., Salisbury, A., Venuthurupalli, S. K., Healy, H., Fassett, R. G., Hoy, W. E. and For the CKD.QLD Group (2012). Data management logistic framework for the registry of CKD.QLD. In: Kerr PG, Special Issue: Abstracts of the 48th Annual Scientific Meeting of the Australian and New Zealand Society of Nephrology. 48th Annual Scientific Meeting of the Australia and New Zealand Society of Nephrology, Auckland, New Zealand, (78-78). 27 - 29 August 2012.


Author Wang, Z.
Salisbury, A.
Venuthurupalli, S. K.
Healy, H.
Fassett, R. G.
Hoy, W. E.
For the CKD.QLD Group
Title of paper Data management logistic framework for the registry of CKD.QLD
Conference name 48th Annual Scientific Meeting of the Australia and New Zealand Society of Nephrology
Conference location Auckland, New Zealand
Conference dates 27 - 29 August 2012
Proceedings title Special Issue: Abstracts of the 48th Annual Scientific Meeting of the Australian and New Zealand Society of Nephrology   Check publisher's open access policy
Journal name Nephrology   Check publisher's open access policy
Place of Publication Richmond, VIC, Australia
Publisher Wiley-Blackwell Publishing Asia
Publication Year 2012
Sub-type Published abstract
ISSN 1440-1797
1320-5358
Editor Kerr PG
Volume 17
Issue Supplement 2
Start page 78
End page 78
Total pages 1
Language eng
Formatted Abstract/Summary
Aim. To describe accrual and processing of data for the Registry of CKD.QLD.
Background. The patient registry is the core element of CKD.QLD. It will
support characterisation and longitudinal surveillance of all CKD patients, and
is the hub around which the practice improvement, health services and research
themes revolve and through which they well be evaluated. We describe some
existing and planned logistics in data accrual and reporting.
Methods. The concepts and approvals for the registry have been described
elsewhere. Funding agencies include Amgen, Queensland Health and the
NHMRC.
Results. An initiation visit precedes enrolment of consenting patients at each
site, incorporating review of the initiative, of good clinical practice in research,
of local data capture mechanisms, and of local needs to support consenting and
recording. Data are accepted from all forms of capture systems, which vary from
excel spreadsheets to detailed web-based databases. Many public sites are now
adopting Audit 4, also favoured by several QLD and Australia-wide private
practices. Ultimately the data should be captured through QLD Health’s planned
E-health record. Data from the fi rst 1,000 consented patients has now been
examined. The master Registry template includes, but is not restricted to, patient
identifi ers, demographics, models of care, diagnostic codings (aligned with
ANZDATA), medications and pathology. Accrual of longitudinal data, including
intercurrent morbidities, development of renal failure and death, is beginning.
Once all current CKD patients are entered, we anticipate these functions will
occupy about 0.25 FTEs of a data/manager/statistician.
Conclusions: This approach minimises demands placed on already busy clinical
sites, and allows CKD.QLD to move fl exibly forward with future developments.
We hope and anticipate that it can inform similar systems nationally.
Q-Index Code CX
Q-Index Status Provisional Code
Institutional Status UQ
Additional Notes No. 197

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Created: Thu, 06 Sep 2012, 11:39:05 EST by Zaimin Wang on behalf of Medicine - Royal Brisbane and Women's Hospital