The role of registries

The incredible advances in computing technology during the latter 20th century have meant that the techniques for data accumulation, storage, and transfer have been transformed. Social media now allow for exchange of ideas in “real-time,” but the accumulation (and analysis) of data remain the cornerstone of scientific endeavor. With the advent of the Internet, data acquisition can now transcend geography, as demonstrated in contemporary multicenter studies. While meta-analyses can subject the primary data to further scrutiny, the accurate accumulation of the primary data remains the starting point.

Clinical Research Office of the Endourological Society (CROES)

The contribution of CROES to facilitate the ordered collection of prospective data is significant and an illustrative example of how international collaboration in urology can translate into a meaningful scientific message. The range of publications reflects the variety of study types, whether randomized surgical studies, prospective registry of a disease, or an interventional technique. The strength of such studies lies in the contributions made by different centers, as shown in the much cited articles from the percutaneous nephrolithotomy (PCNL) database, for instance.

It is hoped that the success of the ureteroscopy and PCNL studies is matched by the current active studies. These include the GreenLight Laser Study, the Renal Mass Study, the study on Narrow Band Imaging in bladder cancer, the nanoknife study in prostate cancer, the Storz Professional Image Enhancement System randomized study in bladder cancer, and the registry for Upper Urinary Tract Urothelial Tumor (UTUC) registry.

UTUC

In relation to the last of these areas, the UTUC registry is particularly valuable given the relative rarity of this condition (reportedly 5% of all urothelial malignancies), and the lack of consensus on best management. Recent publications demonstrated the long-term efficacy of nephron-sparing ureteroscopic approaches in UTUC ^1,2 based on expertise from single center reports (much as laparoscopic partial nephrectomy for renal tumors a decade earlier), and individual groups worldwide will have their own experience in the management of UTUC with a similar approach. Guidelines have proposed where these approaches fit into a treatment algorithm, ³ and collaboration may eventually lead to the dissemination of best accepted practice worldwide.

The primary objective of the CROES registry has been declared to be an evaluation of the incidence, indications, and outcomes of patients presenting with UTUC in relation to the different treatment modalities used and the secondary objective to assess the impact of imaging on recurrence. Recent technologic advances have permitted the traditional “gold standard” of nephroureterectomy to be challenged in suitably selected cases, with endourologic techniques firmly established in the diagnostic pathway and definitive treatment at times.

In terms of diagnostic tools, this is an exciting time with the concurrent development of different imaging technology, as reviewed in this journal earlier this year, ⁴ and time will show which of these proves to be the most practical and widely adopted technique, hopefully supported by clinical studies to show where they will be an improvement on current biopsy techniques.

Beyond the assessment of diagnostic possibilities, a registry such as this should provide some data on outcomes, and by adopting an inclusive approach this should try and account for inherent bias from single center studies. The main drawback for a registry, however, remains quality control of that data entry, whether selection criteria are being adhered to, and whether reporting of complications is comprehensive. Most contemporary registries (and indeed peer-reviewed publications) allow contributors to report their own complications rather than be subject to external audit, and although there are now standards for reporting complications (such as the Clavien classification), the entry of these data should also be encouraged as much as case volume.

The introduction of mandatory data entry for all nephrectomies performed in the United Kingdom (UK), through the auspices of the national organization (British Association of Urological Surgeons), has resulted in a more open approach for reporting outcomes. ⁵ After this, the national organization in the UK has extended this approach to other areas including percutaneous surgery, among others. The inevitable discussions about centralization of care are beyond this article, but should be borne in mind when the implications of surgical data collection are discussed.

Finally, one ultimately successful by-product of data collection across international boundaries may be collaborative ventures in basic science. This is being seen in UTUC, with regard to evaluation of various molecular markers in different recent studies, and indeed may be best suited in a disease now known to have global relevance. ⁶

At this point, everybody involved in treating patients with UTUC are invited to join the CROES UTUC registry. Your contribution will help to provide data empowering the urologic community to deliver the best possible care to their patients. Feel free to contact the CROES office through info@croesoffice.org