Orthopaedic Registers and Databases

Registers of common orthopaedic procedures such as hip joint replacement ^{1 2} have now been established in many different nations or regions ³ . As a research tool on outcomes, registers have different advantages to randomized controlled trials ⁴ . The cases accumulate faster and from more institutions. Data can now be collected electronically ⁵ reducing the likelihood of transcription errors. A large amount of useful information has come from these registers.
There is a class of orthopaedic condition that is so unusual that even major institutions have no opportunity of making a large collection of cases. The Internet offers a way in which such conditions may be collected and studies by providing a site where the clinical details of rare conditions may be reported. The Orthopaedic Rare Conditions Internet Database (ORCID) ⁶ was set up to provide a repository for case studies of rare conditions ⁷ . The idea was promoted with a poster at the Annual Meeting of the AAOS (2000) ⁸ but there has been very little response. It might be preferable to design a true database site which was interactive; but it was clear in 2000 that the time for this effort had not yet arrived. Such sites need to achieve a critical mass before they become a well known and reputable institution.
Databases as a whole offer many opportunities for improving the practice of orthopaedics ⁹ . They provide stable repeatable documentation and with PDAs can take Information Technology to the bedside. They offer a way in which worldwide standardized collection of data can be used to address common but intractable orthopaedic problems. The Surgical Implant Generation Network (SIGN) organization has a database of IM nailing cases ¹⁰ . The Orthopaedic Trauma Association (OTA) maintains the OTA Trauma Registry Database for Multicenter Studies as a member benefit. ¹¹ "The registry is now capable of supporting multicenter studies.  Any individual or group who desires to utilize the OTA trauma database for a clinical study will be able to do so"

Footnotes

Ref	Notes
1	Söderman P, Malchau H, Herberts P, 2000. "Outcome after total hip arthroplasty: Part I. General health evaluation in relation to definition of failure in the Swedish National Total Hip Arthoplasty register." Acta Orthop Scand 71 (4): 354-9 [PubMed] Abstract: The Swedish National Total Hip Arthroplasty register, which was started in 1979, is one of the oldest national quality registers in the world and consists of over 160,000 primary operations and 12,500 revisions. The register identifies risk factors for poor outcomes related to the patient, implant and surgical techniques. The end-point for failure, i.e., revision, does not provide information about the patient's general health after the primary procedure. The aim of this study was twofold. First, to validate the end-point for failure in the Swedish National Total Hip Arthroplasty register and secondly, to study general health after total hip arthroplasty. We validated the outcome of 1,056 primary THRs randomly selected from the Discharge register in Sweden by comparing the data to the Swedish THA register. These patients had answered the SF-36 and Nottingham Health Profile questionnaires. By comparing the clinical outcome, measured as general health, with the results obtained from the register, we evaluated the importance of the end-point for failure. We found that the end-point was useful, but further evaluations are desirable. Patients operated on with hip replacement do very well up to 10 years postoperatively and those who are not revised have good general health. The findings in this study can be used as a reference for others as it shows results from a national register, with a random selection of the study cohort.
2	Söderman P, Malchau H, Herberts P, Zügner R, Regnér H, Garellick G, 2001. "Outcome after total hip arthroplasty: Part II. Disease-specific follow-up and the Swedish National Total Hip Arthroplasty Register." Acta Orthop Scand 72 (2): 113-9 [PubMed] Abstract: The Swedish National Total Hip Arthroplasty Register records primary hip replacements, revisions and surgical technique/environmental factors. The end-point for failure is revision. A prosthesis still in place, however, does not mean success. Clinical and radiographic outcomes should describe in more detail the efficacy of hip replacement surgery instead of the relatively blunt outcome measure that the register can provide. We performed a clinical outcome analysis on patients with primary total hip replacement thus testing the adequacy of the end-point for failure in the Swedish register. 1,113 randomly selected patients who had had total hip replacement surgery between 1986 and 1995 answered a disease-specific self-administered questionnaire (WOMAC). A cohort of 344 patients was studied, using the Harris Hip Score and a conventional radiographic examination as outcome measures. We found clinical failure rates of 13% and 20% for all implants after 10 years, using 60 points or revision as the definition of failure in the Harris Hip Score and WOMAC, respectively. The result, according to the register during the same period, was a 7% revision rate. The clinical failure rate depended on the type of evaluation tool, definition of failure and demographics, which made it difficult to decide whether there was a need for revision. With the exception of pain measured by the Harris Hip Score, the results showed no significant correlation between clinical failure and radiographic failure. Hence, with the knowledge that there is a difference between the revision rate according to the register and clinical outcome, the strict definition of failure in the register is useful as an end-point for primary hip replacement surgery.
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4	Garellick G, Malchau H, Herberts P, 2000. "Survival of hip replacements. A comparison of a randomized trial and a registry." Clin Orthop Relat Res (375): 157-67 [PubMed] Abstract: At the authors' hospital, 410 primary total hip replacements were performed on 372 patients between September 1, 1985, and May 31, 1989. All hips were assigned randomly to receive a Charnley prosthesis with an ogee flanged cup or a Spectron prosthesis with a metal backed cup. Eleven-year survivor analysis, using revision as the end point definition of failure, revealed a survival rate of 93.2% +/- 5.8% for the Charnley replacement and 95.9% +/- 3.0% for the Spectron. If each component of the systems was analyzed (concerning aseptic loosening), the ogee cup and the Spectron stem had 100% survival. The survivorship for all 410 hips was 94.5% +/- 3.4%. If the end point definition of failure was expanded to include patient dissatisfaction, the survival rate decreased to 86.3% +/- 4.9%. These survival rates were compared with the rates obtained by the Swedish National Hip Registry. The national cohort included all patients in Sweden who were treated surgically with a Charnley (14,053 patients) or Spectron (metal backed cup) prosthesis (726 patients) between September 1, 1985, and May 31, 1989. Eleven-year survivor analysis revealed a national survival rate of 92.1% +/- 0.7% for the Charnley replacement and 88.6% +/- 6.1% for the Spectron. The analyses from the Swedish Registry are based on more than 160,000 primary operations and 11,500 revisions. Despite the enormous amount of data, there are drawbacks, and registries never can replace the prospective, randomized trial. One reason is the Swedish National Registry is unable to discriminate between the individual cup and stem components when analyzing the cause of revision, and no clinical or radiographic information is collected. A potential drawback for the randomized trial is performance bias because surgeons from specialized centers might perform better than the general orthopaedic surgeon.
5	Bourne RB, Sibbald WJ, Doig G, Lee L, Adolph S, Robertson D, Provencher M, , 2001. "The Southwestern Ontario Joint Replacement Pilot Project: electronic point-of-care data collection. Southwestern Ontario Study Group." Can J Surg 44 (3): 199-202 [PubMed] Abstract: OBJECTIVE: To pilot a provincial joint replacement registry using electronic point-of-care data collection. DESIGN: Data collection study. SETTING: Southwestern Ontario, which has a population base of 3.5 million people. PARTICIPANTS: Eighteen orthopedic surgeons. METHOD: Information on total hip and knee replacements was obtained by the orthopedic surgeons over a 6-month period. Information was obtained in paper form and electronically on hand-held computers. MAIN OUTCOME MEASURES: Patient demographics, waiting times from referral to operation, patient satisfaction and relevance and value of electronic records compared with paper records. MAIN RESULTS: Data were collected on 815 total hip and knee arthroplasties. A slightly greater number of hips required revision than knees. The majority of patients were in the 60 to 90-year age range. With respect to the waiting time from referral to operation 10% of patients waited less than 5 weeks, 50% waited less than 30 weeks, and 90% waited less than 59 weeks. There was a high level of patient satisfaction with the operation and with hospital care received. Most surgeons found that the gathering and use of data electronically was relevant and easy. The electronic data were more timely, accurate and complete than paper records. CONCLUSION: Electronic point-of-care data collection is appropriate, particularly in high-volume, high-cost surgical interventions such as total joint replacements.
6	Orthopaedic Rare Conditions Internet Database - Orthogate 2008 [Website] Available at http://orthogate.org/orcid/
7	Medscape Orthopaedics & Sports Medicine eJournal 4(1), 2000. Orthopaedic Rare Disease Database Finds a Home on the Internet Clough JFM Available at http://www.medscape.com/viewarticle/408515
8	O.R.C.I.D. An Internet Database for the Management of Rare Conditions 2000 AAOS Poster PE006 Clough JFM [Website] Available at http://www.orthogate.org/orcid/poster/
9	Bohren BF, Hadzikadic M, Hanley EN, 1995. "Extracting knowledge from large medical databases: an automated approach." Comput Biomed Res 28 (3): 191-210 [PubMed] Abstract: Tools which can uncover patterns in patients' records and then make predictions based on that knowledge are and will continue to be high priority in many medical informatics groups. These tools are impacting the performance of outcome studies by discovering patterns which can then be verified with standard statistical tools. This paper demonstrates INC2.5, a general classification system, as a tool for assisting physicians in the decision making process. INC2.5 gathers information from patient records and builds a decision tree which is used to assist physicians in predicting the outcome of new patients. The decision tree will also reveal any patterns which the system found in the data. Successful results of such a system can be used to enhance outcome studies as well as to spread clinical information to areas with fewer resources.
10	SIGN - Surgical Database [Website] Available at http://www.signsurgery.org/
11	OTA Trauma Registry Database for Multicenter Studies [Website] Available at http://www.ota.org/research/multicenter.html