Canadian Organ Replacement Register (CORR): reflecting the past and embracing the future.

INTRODUCTION: The Canadian Organ Replacement Register (CORR) is the only Canadian information system on kidney and extra-kidney organ failure and transplantation in Canada. CORR's mandate is to record and analyze the level of activity and outcomes of vital organ transplantation and treatment of end stage kidney disease using dialysis, either hemodialysis or peritoneal dialysis, activities across Canada. The Canadian Organ Replacement Register was officially launched in 1987, and it included transplantation of extra-renal vital organs (liver, heart, lung, pancreas, bowel), in addition to renal transplantation and replacement therapy, with new financial support from the provinces. OBJECTIVE: This manuscript describes the process of data acquisition and reporting, focusing on the patients with end stage kidney disease on dialysis, with data reported from the 2014 CORR Annual Data Report and the Center-Specific Reports on Clinical Measures. METHODS: CORR is currently housed in the Canadian Institute for Health Information and collects data from hospital dialysis programs, regional transplant programs, organ procurement organizations and kidney dialysis services offered at independent health facilities. Data on patients is collected by completion of survey forms for each patient at the start of dialysis or receiving a transplant, using the Initial Registration form, and yearly follow up forms, which collects data on the status of the patient as of October 31(st). RESULTS: The incident rate per million population (RPMP) has remained stable with the exception of the 65+ age group with has experience a modest decrease since 2001. However, there has been an increasing prevalence of ESKD diagnoses, with the highest rate per million population (RPMP) amongst the age group 65+ years. This is likely attributed to gradual improving patient survival. Between 2003 and 2012, nearly 90% of dialysis patients younger than <18 and 26% of patients 75+ years survived for at least five years. CONCLUSION: As the number of people treated for end-stage organ failure grows, so does the importance of understanding their treatment and outcomes. In 2014, CORR continues to evolve and support the important information need to advance ESRD research and clinical practice.

INTRODUCTION: Le Registre canadien des insuffisances et des transplantations d'organes (RCITO) est le seul réseau d'information sur l'insuffisance rénale et extrarénale et la transplantation au Canada. Le mandat du RCITO est de rapporter et d'analyser le niveau d'activité et les résultats des transplantations d'organes vitaux, de même que le traitement de l'insuffisance rénale terminale (IRT) par la dialyse, sous forme d'hémodialyse ou de dialyse péritonéale, au Canada. Le registre a officiellement été lancé en 1987, et il comprenait la transplantation d'organes vitaux extrarénaux (foie, cœur, poumon, pancréas, intestin), en plus de la transplantation rénale et de la thérapie de remplacement rénal, grâce à un financement nouveau des provinces. OBJECTIFS: Le présent manuscrit décrit le processus d'acquisition et de communication des données sur les patients au stade d'insuffisance rénale terminale qui ont une thérapie de remplacement rénal, et des données tirées du rapport annuel de 2014 du RCITO et de rapports concernant les centres au sujet des mesures cliniques. MÉTHODES: Le RCITO est actuellement hébergé par l'Institut canadien d'information sur la santé et recueille des données au sujet des programmes de dialyse en milieu hospitalier, des programmes régionaux de transplantation, des services de prélèvement d'organes et des services de dialyse rénale offerts dans des établissements de santé indépendants. Les données sur les patients sont recueillies par le truchement d'un sondage mené auprès de chaque patient au début de la dialyse ou avant une transplantation, grâce au formulaire d'enregistrement et aux formulaires de suivi annuels, qui recueillent des données sur le statut du patient en date du 31 Octobre. RÉSULTATS: Le taux d'incidence par million de population est demeuré stable, à l'exception de la tranche d'âge des 65 ans et plus, qui a subi une faible diminution depuis 2001. Toutefois, il y a eu prévalence accrue des diagnostics d'IRT, avec le taux le plus élevé par million de population chez les 65 ans et plus. Ceci est probablement attribuable à l'amélioration graduelle de la survie des patients. Entre 2003 et 2012, près de 90% des patients en dialyse âgés de moins de 18 ans et 26% des patients de plus de 75 ans ont survécu pendant au moins 5 ans. CONCLUSION: L'importance de comprendre les traitements appropriés et les résultats croît à mesure qu'augmente le nombre de personnes traitées pour insuffisance d'organe. En 2014, le RCITO continue d'évoluer et de soutenir les besoins considérables en information afin de faire avancer la recherche et la pratique clinique en IRT.

Organ donation and transplantation in Canada: insights from the Canadian Organ Replacement Register.

PURPOSE OF REVIEW: To provide an overview of the transplant component of the Canadian Organ Replacement Register (CORR). FINDINGS: CORR is the national registry of organ failure in Canada. It has existed in some form since 1972 and currently houses data on patients with end-stage renal disease and solid organ transplants (kidney and/or non-kidney). The transplant component of CORR receives data on a voluntary basis from individual transplant centres and organ procurement organizations across the country. Coverage for transplant procedures is comprehensive and complete. Long-term outcomes are tracked based on follow-up reports from participating transplant centres. The longitudinal nature of CORR provides an opportunity to observe the trajectory of a patient's journey with organ failure over their life span. Research studies conducted using CORR data inform both practitioners and health policy makers alike. IMPLICATIONS: The importance of registry data in monitoring and improving care for Canadian transplant candidates/recipients cannot be over-stated. This paper provides an overview of the transplant data in CORR including its history, data considerations, recent findings, new initiatives, and future directions.

BUT DE LA REVUE: Offrir un aperçu du volet « transplantation d'organes ¼ du Registre canadien des insuffisances et des transplantations d'organes (RCITO). RÉSULTATS: Le RCITO est le Registre canadien des insuffisances d'organes au Canada. Il a commencé à prendre forme en 1972, et contient à l'heure actuelle des données sur des patients atteints de néphropathie terminale et sur des transplantations (rénales ou non rénales) d'organes pleins. Le volet « transplantation d'organes ¼ du RCITO collige des données qui ont été envoyées, sur une base volontaire, par des centres de transplantation et des services d'approvisionnement en organes à travers le pays. Le Registre offre une couverture exhaustive et complète des différentes interventions de transplantation. Les résultats à long terme sont retracés à partir de rapports de rendez-vous de suivi des centres de transplantation participants. L'ampleur longitudinale du RCITO offre la possibilité d'observer le parcours, tout au long de sa vie, du patient atteint d'une insuffisance organique. Les études produites à partir des données du RCITO éclairent à la fois les praticiens et les décideurs du domaine de la santé. IMPLICATIONS: On ne peut surestimer l'importance des données du Registre lorsqu'il s'agit d'effectuer le suivi des candidats canadiens potentiels à une transplantation, ou d'améliorer les soins qui leur sont offerts. Cette revue offre un aperçu des données du RCITO qui se rapportent à la transplantation d'organes, dont : l'historique, les éléments à considérer sur les données, des résultats récents, de nouvelles initiatives et les orientations futures.

Decreased survival in liver transplant patients requiring chronic dialysis: a Canadian experience.

BACKGROUND: Chronic kidney disease is associated with increased mortality among nonrenal organ transplant recipients. End-stage renal disease (ESRD) is a serious complication after orthotopic liver transplantation (OLT). It is unclear if the outcomes of these individuals are different from nontransplant patients requiring dialysis or a kidney transplant. METHODS: We report the incidence of ESRD in OLT recipients and compare their outcomes to matched dialysis controls. We analyzed 4186 patients who received an OLT in Canada between January 1981 and December 2002 and 228 matched, nontransplant, chronic dialysis controls. RESULTS: The incidence of ESRD after OLT was 2.9% (n=120). The unadjusted mortality rate for those who required chronic dialysis was 49.2% compared with 26.8% in those who did not develop kidney failure (P<0.0001). The survival of OLT recipients on dialysis was lower than the matched chronic dialysis cohort (log-rank test, P=0.01). A kidney transplant was performed in 24% of the OLT recipients and 21% of the matched dialysis cohort, and their overall survival was similar. The OLT patients who remained on dialysis had a significantly lower survival when compared with matched dialysis patients who did not receive a kidney transplant (log-rank test, P=0.0002). CONCLUSIONS: Mortality was greater for OLT recipients on dialysis than would be expected from a matched, nontransplant, dialysis cohort. Kidney transplantation may abrogate some of this increased mortality risk.

International differences in dialysis mortality reflect background general population atherosclerotic cardiovascular mortality.

Existing national, racial, and ethnic differences in dialysis patient mortality rates largely are unexplained. This study aimed to test the hypothesis that mortality rates related to atherosclerotic cardiovascular disease (ASCVD) in dialysis populations (DP) and in the background general populations (GP) are correlated. In a cross-sectional, multinational study, all-cause and ASCVD mortality rates were compared between GP and DP using the most recent data from the World Health Organization mortality database (67 countries; 1,571,852,000 population) and from national renal registries (26 countries; 623,900 population). Across GP of 67 countries (14,082,146 deaths), all-cause mortality rates (median 8.88 per 1000 population; range 1.93 to 15.40) were strongly related to ASCVD mortality rates (median 3.21; range 0.53 to 8.69), with Eastern European countries clustering in the upper and Southeast and East Asian countries in the lower rate ranges. Across DP (103,432 deaths), mortality rates from all causes (median 166.20; range 54.47 to 268.80) and from ASCVD (median 63.39 per 1000 population; range 21.52 to 162.40) were higher and strongly correlated. ASCVD mortality rates in DP and in the GP were significantly correlated; the relationship became even stronger after adjustment for age (R(2) = 0.56, P < 0.0001). A substantial portion of the variability in mortality rates that were observed across DP worldwide is attributable to the variability in background ASCVD mortality rates in the respective GP. Genetic and environmental factors may underlie these differences.

Diabetes in Ontario: determination of prevalence and incidence using a validated administrative data algorithm.

OBJECTIVE: Accurate information about the magnitude and distribution of diabetes can inform policy and support health care evaluation. We linked physician service claims (PSCs) and hospital discharge abstracts (HDAs) to determine diabetes prevalence and incidence. RESEARCH DESIGN AND METHODS: A retrospective cohort was constructed using administrative data from the national HDA database, PSCs for Ontario (population 11 million), and registries carrying demographics and vital statistics. All HDAs and PSCs bearing a diagnosis of diabetes (ICD9-CM 250) were selected for 1991-1999. Two previously reported algorithms for identification of diabetes were applied as follows: "1-claim" (any HDA or PSC showing diabetes) and "2-claim" (one HDA or two PSCs within 2 years showing diabetes). Incident cases were defined as individuals who met the criteria for diabetes for the first time after at least 2 years of observation. For validation, diagnostic data abstracted from primary care charts (n=3,317) of 57 randomly selected physicians were linked to the administrative data cohort, and sensitivity and specificity were calculated. RESULTS: -In 1998, 696,938 individuals met the 1-claim criteria and 528,280 met the 2-claim criteria. Sensitivity for diabetes was 90 and 86%; for the 1- and 2-claim algorithms, specificity was 92 and 97%, respectively, and positive predictive values were 61 and 80%, respectively. Using the 2-claim algorithm, the all-age prevalence increased from 3.2% in 1993 to 4.5% in 1998 (6.1% in adults). Incidence remained stable. CONCLUSIONS: Administrative data can be used to establish population-based incidence and prevalence of diabetes. Diabetes prevalence is increasing in Ontario and is considerably higher than self-reported rates.