Scottish Renal Registry

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Scottish Renal Registry
Use of Linkage to enhance Audit Data
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Scottish Renal Registry
Keith Simpson Consultant Physician Renal Unit,
Glasgow Royal Infirmary Chair SRR keith_simpson_at_c
ompuserve.com
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Scottish Renal Registry
All renal units in Scotland All patients
receiving renal replacement therapy for ESRD 1964
present All electronic ( no paper
returns) Funded and supported by ISD Collaborate
with CSBS Audit, Clinical QA, Research, Service
planning, Teaching
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Record Linkage Why How Potential
Errors Benefits Cost Risks with examples
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Record Linkage Why Capitalise on the effort
expended by others
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Record Linkage Why Capitalise on the effort
expended by others Ovid Search Record Linkage
1479 hits Record Linkage and Registries
605 hits Renal 26 hits
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Record Linkage Why Capitalise on the effort
expended by others Cheap !
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Record Linkage Why Capitalise on the effort
expended by others Cheap ! Possible in
retrospect
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Postoperative adhesions Ten-year follow-up of
12,584 patients undergoing lower abdominal
surgery.   Scottish National Health Service
Medical Record Linkage Database The study
provides sound justification for improved
adhesion prevention strategies.   Parker MC, et
al Diseases of the Colon Rectum. 200144(6)
822-30
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Record Linkage Why Capitalise on the effort of
others Cheap ! Possible in retrospect Ethical
Observe experiments of nature (or man)
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Non-steroidal anti-inflammatory drugs and
hospitalization for acute renal failure. Evans
JM. McGregor E et al QJM. 1995 88(8) 551-7.
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Record Linkage Why Capitalise on the effort of
others Cheap ! Possible in retrospect Ethical
Observe experiments of nature (or man) Better
-- Statutory requirement to register deaths
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Computerised record linkage Compared with
traditional patient follow-up methods in
clinical trials and illustrated in a prospective
epidemiological study Computerised record
linkage systems have great potential for
enhancing or even replacing traditional methods
of adverse event reporting (WOSCOPS) Deaths,
cancers, and hospitalisations Shepard J. et al
J. Clin. Epidemiol. 1995 48(12)1441-52.
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Record Linkage Why How Benefits Cost Risks with
examples
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Matching Electronic Databases Date of
Birth Date of Death (Date of Admission) Surname Fo
rename Post Code Hospital Number ? CHI ? NHS
Number
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Matching Electronic DatabasesIf deduplication
is required try switching fields Dates 01/02/54
try 02/01/54Surname try
ForenameForename try Surname
Mac try Mc ie try ee and eiPost Code
Detect invalid PC, Consider l -1
O - 0 3 8 5 - SDirect contact usually
required to sort it out.
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Errors
Study 1 (errors)
Inclusions Exclusions Assumptions Definition Case
ascertainment QA
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Liano, F. and Pascual, J. Epidemiology of acute
renal failure a prospective, multicenter,
community-based study. Madrid Acute Renal
Failure Study Group. Kidney International 1996
50(3) 811-818.Feest, T. G., Round, A., and
Hamad, S. Incidence of severe acute renal
failure in adults results of a community based
study. BMJ 1993 306(6876) 481-3. Metcalfe,
W., Simpson M, Khan I, Prescott, G. J., Simpson
K, Smith C., and MacLeod, A. M. Acute renal
failure requiring renal replacement
therapyIncidence and OutcomesIn preparation,
2001.
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Liano, F., et al Epidemiology of acute renal
failureSerum Creatinine gt 177 micromol/L
Feest, TG., et al Incidence of severe acute
renal failure Serum Creatinine gt 500
micromol/L Metcalfe, W., Acute renal
failure On Dialysis
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Errors
Study 1 (errors)
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Errors
Study 1 (errors)
Study 2 (errors)
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Compound Errors
Study 1 (errors)
Study 2 (errors)
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Benefits
Case ascertainment defined in a registry Known
and guaranteed denominator Accepted patient
identifier Professional research collaborators
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Record Linkage Why How Potential
Errors Benefits Cost ? Risks
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Record Linkage Why How Potential
Errors Benefits Cost Risks
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Evaluation of the encryption procedure and record
linkage in the Belgian national cancer
registry   record linkage based on the pseudonym
leads to missed duplicates and an
overestimation of cancer incidence Van Eycken
E, et al Arch Public Health. 2000 58(6) 281-94
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SRR Linkages
ISD Post Codes Hospital Admissions Co-Morbidi
ty Cancer Registry West of Scotland BP
Clinic UK Transplant Service Scottish Intensive
Care Society
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Deprivation Category-All Scotland v New Patients
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Distance (km) to first renal unit 1980 - 1989
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Distance (km) to first renal unit 1990 - 1999
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The Cancer Registry

• National registry of all malignant disease
• Records from 1980 to present
• Data collected from
• Death certification
• Pathology and post mortem returns
• Oncology clinics
• Radiotherapy clinics

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Cancer incidenceRRT vs. National
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Tumour types according to diagnosis