Associate Registry Research Articles

Adult outcomes of childhood kidney replacement therapy in Europe from 2008 to 2019: an ERA Registry study.

Young adults starting kidney replacement therapy (KRT) during childhood and reaching their 18th birthday (i.e. adult survivors of childhood KRT) form a challenging population of interest to nephrologists treating adults, as during this period there will be a transition to adult renal centres. Nonetheless, few studies have focused on the epidemiology of KRT in this group. We aimed to provide an update on these patients' characteristics, treatment history, graft and patient survival, to report their 5-year prognosis, and expected remaining lifetime. Data on KRT patients reaching their 18th birthday in 2008-2019 were collected from 21 European countries/regions providing individual patient data to the European Renal Association (ERA) Registry. Patient characteristics and treatment trajectories were examined before and after turning 18 years. Kaplan-Meier and Cox proportional hazards regression were used for patient and graft survival analyses. In total, 2944 patients were included. The proportion of adult survivors initiating KRT at a very young age (0-4 years), and undergoing pre-emptive kidney transplantation increased. Unadjusted 5-year patient survival was 96.9% (95% CI: 96.2-97.5). Dialysis patients had a higher risk of death than kidney transplant recipients (adjusted hazard ratio 5.44 (95% CI: 3.34-8.86)). Between ages 18 and 23 years, about 21% of the adult survivors lost their kidney transplant and 34% of the dialysis patients continued this treatment. Compared with the general population, life expectancy for eighteen-year-old kidney transplant and dialysis patients was 17 and 40 years shorter, respectively. Life expectancy of 18-year-old kidney transplant recipients was lower compared with the general population. Yet, having a functioning kidney graft at age 18 years resulted in better outcomes than being on dialysis. Nevertheless, between ages 18 and 23 years, about one-fifth of the kidney grafts failed and one-third of the patients remained on dialysis.

Application of cultured epidermal autograft, JACE®, improves survival rate in extensive burns: A propensity score matching study using Tokyo registry data.

Cultured epidermal autograft, JACE®, was introduced into the Japanese national health insurance system in 2009 and has been used in more than 1000 cases of extensive burns. The aim of this study was to investigate whether the use of JACE® contributes to survival rate in extensive burns. In this study, 119 cases were selected from 3990 cases in Tokyo Burn Unit Association registry data from 2009 to 2023, excluding cases with less than 40% total body surface area, cases of deaths within 4 weeks and cases with unknown length of hospital stay. In total, 25 patients treated with JACE® were selected and matched with another 25 patients who did not receive JACE® using propensity score matching. The results showed that patients treated with JACE® had a significantly higher survival rate than did those who were not treated with JACE® at all time points between 6 and 9 weeks post-injury. In addition, there was no significant difference in length of hospital stay between the groups. These results suggest that the use of JACE® in patients with extensive burns contributes to patient survival and does not prolong hospital stay.

Changes in the epidemiology of kidney replacement therapy across Europe in 2020-the first year of the COVID-19 pandemic: an ERA Registry study.

In 2020, the coronavirus disease 2019 (COVID-19) pandemic caused disruptions in kidney replacement therapy (KRT) services worldwide. The aim of this study was to assess the effect of the COVID-19 pandemic in 2020 on the incidence of KRT, kidney transplantation activity, mortality and prevalence of KRT across Europe. Patients receiving KRT were included from 17 countries providing data to the European Renal Association Registry. The epidemiology of KRT in 2020 was compared with average data from the period 2017-2019. Changes occurring during the first and second waves of the pandemic were also explored. The incidence of KRT was 6.2% lower in 2020 compared with 2017-2019, with the lowest point (-22.7%) during the first wave in April. The decrease varied across countries, was smaller in males (-5.2%) than in females (-8.2%) and was moderate for peritoneal dialysis (-3.7%) and haemodialysis (-5.4%) but substantial for pre-emptive kidney transplantation (-23.6%). The kidney transplantation rate decreased by 22.5%, reaching a nadir of -80.1% during the first wave, and was greatest for living donor kidney transplants (-30.5%). While in most countries the kidney transplantation rate decreased, in the Nordic/Baltic countries and Greece there was no clear decrease. In dialysis patients, mortality increased by 11.4% and was highest in those 65-74years of age (16.1%), in those with diabetes as the primary renal disease (15.1%) and in those on haemodialysis (12.4%). In transplant recipients, the mortality was 25.8% higher, but there were no subgroups that stood out. In contrast to the rising prevalence of KRT observed over the past decades across Europe, the prevalence at the end of 2020 (N=317787) resembled that of 2019 (N=317077). The COVID-19 pandemic has had a substantial impact on the incidence of KRT, kidney transplant activity, mortality of KRT and prevalence of KRT in Europe with variations across countries.

#364 Patient characteristics, treatment history and prognosis of adult survivors of childhood kidney replacement therapy—an ERA Registry study

Abstract Background and Aims Young adults who initiated kidney replacement therapy (KRT) during childhood and reached their 18th birthday (i.e. adult survivors of childhood KRT) are a particularly challenging patient group. Besides the changes associated with adolescence, they go through a transition from paediatric to adult nephrology centres, in which patients are expected to take responsibility of their own care. This increases the risk of non-compliance to treatment and graft failure. Nevertheless, not many epidemiological studies have focused on adult survivors of childhood KRT. This type of study would support healthcare providers in obtaining knowledge about the prognosis of this patient group and, perhaps, recognizing possibilities of treatment improvements. We aimed to provide up-to-date information on patient characteristics, treatment history, (graft) survival, 5-year prognosis and expected remaining lifetime of adult survivors of childhood KRT. Method KRT data was used from 21 European countries/regions that contributed with individual patient data to the European Renal Association (ERA) Registry. Adult survivors of childhood KRT, reaching the age of 18 years between 2008 and 2019, were included in the analysis, and their patient characteristics and treatment trajectories were examined. Kaplan-Meier and Cox proportional hazards regression were used in patient and graft survival analyses. The expected remaining lifetime of all KRT patients from the age of 18 years onwards was calculated overall and stratified by sex and treatment modality at the 18th birthday. Results We included 2 944 patients in the analysis, most of them were 10-14 (32.9%) or 15-17 (30.6%) years at start of KRT, and congenital anomalies of the kidney and urinary tract (CAKUT) were the most frequent cause of kidney failure (38.8%). Peritoneal dialysis was the most common treatment at start of KRT (37.8%), yet the percentage of adult survivors who received a pre-emptive kidney transplant increased from 25.6% in 2008-2011 to 32.4% in 2016-2019. By their 18th birthday, 81.4% of patients had a functioning kidney transplant. The overall unadjusted 5-year patient survival after their 18th birthday was 96.9% (95% CI 96.2-97.5), yet adult survivors on dialysis had an almost 4 times higher risk of death than their peers with a functioning kidney graft (adjusted HR 3.76 (95% CI: 2.55-5.53)). Besides, about 21% of the grafts failed during the 5 years after the 18th birthday (unadjusted 5-year graft survival: 78.9% (95% CI: 77.1-80.7)). Eighteen-year-old kidney transplant recipients reached 74% of the expected remaining lifetime of the general population, whereas dialysis patients only reached 37%. Conclusion Even at the young age of 18 years the remaining life expectancy of kidney transplant recipients was lower compared with the general population, and about one fifth of the grafts failed within 5 years after the patients’ 18th birthday. Still, as expected, adult survivors with a functioning kidney transplant at 18 years showed better outcomes than the ones on dialysis, with a greater 5-year survival and longer life expectancy. This epidemiological study reports on one of the biggest cohorts of adult survivors of childhood KRT studied to date. It provides unique knowledge on the prognosis of these patients, establishing the first step towards the optimization of care in this challenging patient group.

#1637 Diverging trends in kidney replacement therapy (KRT) incidence in Madrid and Catalonia in the past decade

Abstract Background and Aims Chronic kidney disease (CKD) is one of the fastest growing global causes of death and the number of persons on KRT is increasing. A critical assessment of current clinical practice across regions may identify best clinical practice, providing a benchmark to improve outcomes. Given the long life expectancy in Spain and its high proportion of the population over 65 y/o, analysis of Spanish data may provide insight for the future for other European countries. Catalonia (Cat) and Madrid (Mad) are two of the most populated Spanish Autonomous Communities, have similar life expectancy (above 83 years) and GDP per capita, and together account for 30% of Spanish population and 38% of GDP. The aim was to set the basis for benchmarking in CKD care and KRT initiation by comparing the evolving KRT incidence of two representative Spanish Autonomous Communities. Method We compared the KRT incidence in Cat and Mad from 2012 to 2021, using data from European Renal Association (ERA) Registry annual reports and the Spanish Instituto Nacional de Estadistica's (INE) census. Results From 2012 to 2021, the incidence of KRT (day 1) adjusted for age and sex increased by 69.7 pmp (59% increase) in Cat (from 118.7 to 188.4 pmp) and by 14.2 pmp (12% increase) in Mad (from 115.5 to 129.7 pmp). The differential incidence of KRT between Cat and Mad increased from 3.2 to 58.7 pmp, i.e., 1734% increase (Fig. 1A). As a result, the incidence of KRT was 45% higher in Cat than in Mad in 2021 (up from 3% higher in 2012). During the same period, the median age to start KRT increased from 67.0 to 69.6 years (2.6 years, 3.9%) in Cat and from 66.1 to 66.9 years (0.8 years, 1.2%) in Mad. Median age at KRT initiation in 2021 was 3 years older in Cat in both men (Cat 70.0 (58.4-77.8), Mad 67.3 (56.9-76.2)) and women (Cat 69.0 (58.4-77.2), Mad 66.1 (51.7-75.8)). In subgroup analysis by age and sex, the largest difference in KRT incidence in 2021 was observed for women and for those aged 75+ years: Cat/Mad KRT incidence (pmarp) ratio was 1.79 in women 75+, 1.62 in men 75+, 1.49 in women <75 y/o, 1.34 in men <75 y/o (Fig. 1B). The gap between Cat and Mad increased progressively with age in both men and women and the slope was steeper for women. The contribution of diabetes to the overall incidence of KRT ranged from 16.8% to 23.2% in Cat and from 24.3% to 29.0% in Mad between 2012 and 2021, remaining grossly stable or decreasing slightly over time. For most causes, the incidence adjusted for age and sex in Cat and Mad was similar, with largest differences observed for unknown cause (the most common cause in Cat: Cat 45.9 pmp, Mad 7.9 pmp) and missing (the 3rd most common cause in Cat after unknown and diabetes: Cat 25.4 pmp, Mad 0) (Fig. 1C). Together, unknown and missing causes of CKD accounted for 38.1% of incident KRT cases in Cat in 2021. Pre-emptive transplantation was 3-fold more common in Cat in 2021 (7.6% vs 2.7%), while incidence of haemodialysis and peritoneal dialysis were similar (Fig. 1D). Conclusion In conclusion, trends for KRT incidence differed for two Autonomous Communities from the same country, broadly comparable in terms of population, life expectancy and GDP. The incidence of KRT was higher in Catalonia, and the gap increasing over time, especially among the elderly and older women, with unknown cause of CKD being the leading cause of incident KRT. An in-depth analysis of the drivers of these differences may bring interesting insight into best practice for CKD prevention, treatment to slow CKD progression and prescription and initiation of KRT.

#1611 Diverging epidemiology of kidney replacement therapy (KRT) prevalence in Madrid and Catalonia between 2012 and 2021

Abstract Background and Aims Chronic kidney disease (CKD) is one of the fastest growing global causes of death and the number of persons on kidney replacement therapy (KRT) is increasing. A critical assessment of current clinical practice in different regions may identify best clinical practice and provide a benchmark to improve outcomes. Given the current long-life expectancy in Spain and its high proportion of elderly population, analysis of Spanish data may provide insight of interest for the future for other European countries. Catalonia (Cat) and Madrid (Mad) are among the three most populated Spanish Autonomous Communities and have similar life expectancy, gross domestic product (GDP) and GDP per capita, accounting for 30% of Spain's population and 38% of GDP. The aim was to set the basis for benchmarking in CKD care and KRT initiation and care by comparing the evolving prevalence of KRT in Cat and Mad. Method We compared KRT prevalence in Cat and Mad over the past years using data from European Renal Association (ERA) Registry annual reports and Spanish Instituto Nacional de Estadística's (INE) census. Results From 2012 to 2021, the adjusted prevalence of KRT per million population (pmp) increased by 275.8 (1221 to 1479, 22.6% increase) in Cat and by 134.8 (1046 to 1118, 12.9% increase) in Mad. The difference between Cat and Mad increased from 175 to 316 pmp (60% increase), resulting in a 26.8% higher KRT prevalence in Cat than in Mad in 2021 (up from 16.7% higher in 2012) (Fig. 1A). During the same period, the median age of prevalent KRT patients increased from 63.2 to 65.4 years (yrs) (2.2 yrs, 3.5%) in Cat and from 62.2 to 63.8 years (1.6 yrs, 2.6%) in Mad. In 2021, median age for prevalent patients on KRT was 1.6 yrs older in Cat (65.4 (53.9, 75.3)) than in Mad (63.8 (52.6, 74.1)), this difference being of 2.5 yrs in women (Cat 65.5 (53.6, 75.7), Mad (63 (51, 73.8), difference) and 1.1 yrs in men (Cat 65.3 (53.9, 75); Mad 64.2 (53.4, 74.3)). In subgroup analysis by age and sex, prevalence of KRT per million age-related population (pmarp) in 2021 was always higher in Cat than in Mad, except for women aged 20-44 yrs (363.7 in Cat, 370.5 in Mad, Cat/Mad ratio 0.98), and the largest gap was observed for women <19 yrs (Cat 77.4, Mad 41.5, Cat/Mad ratio 1.86). The Cat-Mad ratio increased with age in women >45 yrs, but not in men (Fig. 1B) The contribution of diabetes to KRT prevalence remained stable or increased slightly in both Cat (13.9-15.5%) and Mad (17.4-17.7%) between 2012 and 2021. In 2021 for most causes of KRT the prevalence adjusted for age and sex was higher in Cat, except for hypertension and miscellaneous. The largest differences were observed for unknown cause (most common cause in Cat: Cat 330.8, Mad 85.5, difference 245.3 pmp), miscellaneous (most common cause in Mad: Cat 165.9, Mad 271.5, difference −105.6 pmp), and missing (Cat 53.8, Mad 0, difference 53.8 pmp) (Fig. 1C). Prevalence of kidney transplantation in 2021 was higher in Cat than Mad (60.0% vs 54.9%), while prevalence of hemodialysis and peritoneal dialysis was higher in Mad (39.6% and 5.5%, respectively) than in Cat (36.2% and 3.9%) (Fig. 1D). Conclusion In conclusion, a stark difference in prevalence trends and in current KRT was observed for two Autonomous Communities within the same country which are broadly comparable in terms of population, life expectancy and GDP. An in-depth analysis of the drivers of these differences may bring insight into best practices for CKD prevention, treatment to slow CKD progression, timing and criteria for initiation of KRT and standard of care for KRT.

Durvalumab impacts progression-free survival while high-dose radiation >66 Gy improves local control without excess toxicity in unresectable NSCLC stage III: Real-world data from the Austrian radio-oncological lung cancer study association registry (ALLSTAR)

BackgroundChemo-radioimmunotherapy with total radiation doses of 60–66 Gy in 2 Gy fractions is the standard of care for non-small cell lung cancer (NSCLC) UICC stage III. The Austrian radio-oncological lung cancer study association registry (ALLSTAR) is a prospective multicentre registry intended to document clinical practice at the beginning of the Durvalumab era. Patients and methodsPatients were eligible if they had pathologically verified unresectable NSCLC stage III with a curative treatment option. Chemo-radiation combined with immunotherapy was performed according to local treatment practices. The endpoints were local control (LC), progression-free survival (PFS) and toxicity. ResultsBetween 2020/03 and 2023/04, 12/14 (86 %) Austrian radiation-oncology centres recruited 188 patients (median 17, range: 1–89). PD-L1 testing was performed in 173/188 (93 %) patients. The median interval between the end of chemoradiotherapy and start of Durvalumab was 14 days (range: 1–65). About 40 % (75/188) of the patients received a total radiation dose of > 66 Gy (range: 67.1–100), which improved 2-year LC (86 % versus 60 %, HR = 0.41; 95 %-CI: 0.17–0.98; log-rank p-value < 0.05). Median PFS for patients with Durvalumab was 25.8 months (95 %-CI: 21.9-not reached) compared to 15.7 months (95 %-CI: 13.2–27.8) for those without (HR = 1.88; 95 %-CI: 1.16–3.05; log-rank p-value < 0.01). The rates of esophageal and pulmonary toxicities were 34.6 % and 23.9 %, respectively, including one case of grade 4 pneumonitis. In the subcohort of 75 patients who received > 66 Gy, 19 (25 %) cases of pulmonary toxicity grades 1–3 were observed. ConclusionWhile Durvalumab impacts PFS, LC can be improved by total radiation doses > 66 Gy without excess toxicity.

A comparison of the epidemiology of kidney replacement therapy between Europe and the United States: 2021 data of the ERA Registry and the USRDS.

This paper compares the most recent data on the incidence and prevalence of kidney replacement therapy (KRT), kidney transplantation rates, and mortality on KRT from Europe to those from the United States (US), including comparisons of treatment modalities (haemodialysis (HD), peritoneal dialysis (PD), and kidney transplantation (KTx)). Data were derived from the annual reports of the European Renal Association (ERA) Registry and the United States Renal Data System (USRDS). The European data include information from national and regional renal registries providing the ERA Registry with individual patient data. Additional analyses were performed to present results for all participating European countries together. In 2021, the KRT incidence in the US (409.7 per million population (pmp)) was almost 3-fold higher than in Europe (144.4pmp). Despite the substantial difference in KRT incidence, approximately the same proportion of patients initiated HD (Europe: 82%, US: 84%), PD (14%; 13%, respectively), or underwent pre-emptive KTx (4%; 3%, respectively). The KRT prevalence in the US (2436.1pmp) was 2-fold higher than in Europe (1187.8pmp). Within Europe, approximately half of all prevalent patients were living with a functioning graft (47%), while in the US, this was one third (32%). The number of kidney transplantations performed was almost twice as high in the US (77.0pmp) compared to Europe (41.6pmp). The mortality of patients receiving KRT was 1.6-fold higher in the US (157.3 per 1000 patient years) compared to Europe (98.7 per 1000 patient years). The US had a much higher KRT incidence, prevalence, and mortality compared to Europe, and despite a higher kidney transplantation rate, a lower proportion of prevalent patients with a functioning graft.

Low Vision Practice and Service Provision Among Optometrists in Ghana: A Nationwide Survey

ABSTRACT Purpose To characterize practice patterns of low vision services among Optometrists in Ghana. Methods The nationwide cross-sectional survey identified entities through the Ghana Optometrists Association (GOA) registry and utilized a semi-structured questionnaire to consolidate survey information that comprises practitioners’ demographics, available services, diagnostic equipment, barriers to service provision and utilization, and interventions. Results 300 Optometrists were identified, with 213 surveyed (71% response rate). About fifty percent (52.6%) were in private practice, and more than two-thirds (77%) did not provide low vision services. Most (≥70%) reported lack of assistive devices, and basic eye care examination kits as the main barriers to low vision service provision. Similarly, practitioners reported unawareness of the presence of low vision centres (76.1%), and high cost of low vision aids (75.1%) as the prime perceived barriers for patients to utilize low vision services. Continuous professional development and public education (89–90%) were suggested as interventions to improve the uptake of low vision services. After statistical adjustment, private facility type (Adjusted odds ratio [AOR] = 0.35, p = 0.010) and lack of basic eye examination kits (AOR = 0.32, p = 0.002) were significantly associated with reduced odds of low vision service provision. Conversely, ≥15 years of work experience (AOR = 6.37, p = 0.011) was significantly associated with increased odds of low vision service provision. Conclusions Overall, the results indicate inadequate low vision coverage and service delivery. Government policies must be directed towards equipping practitioners with equipment and subsidize patient cost of treatment to optimize low vision care.

157P Durvalumab impacts progression-free survival but not local control in patients with inoperable NSCLC stage III: Real-world data from the Austrian radio-oncological lung cancer study association registry (ALLSTAR)

157P Durvalumab impacts progression-free survival but not local control in patients with inoperable NSCLC stage III: Real-world data from the Austrian radio-oncological lung cancer study association registry (ALLSTAR)

Investigating the “sex paradox” in pulmonary arterial hypertension: Results from the Pulmonary Hypertension Association Registry (PHAR)

BackgroundFemale sex is a significant risk factor for pulmonary arterial hypertension (PAH), yet males with PAH have worse survival – a phenomenon referred to as the “sex paradox” in PAH. MethodsAll adult PAH patients in the Pulmonary Hypertension Association Registry (PHAR) with congruent sex and gender were included. Baseline differences in demographics, hemodynamics, functional parameters, and quality of life were assessed by sex. Kaplan-Meier survival analysis was used to evaluate survival by sex. Mediation analysis was conducted with Cox proportional hazards regression by comparing the unadjusted hazard ratios for sex before and after adjustment for covariates. The plausibility of collider-stratification bias was assessed by modeling how large an unmeasured factor would have to be to generate the observed sex-based mortality differences. Subgroup analysis was performed on idiopathic and incident patients. ResultsAmong the 1,891 patients included, 75% were female. Compared to men, women had less favorable hemodynamics, lower six-minute walk distance, more PAH therapies, and worse functional class; however, sex-based differences were less pronounced when accounting for body surface area or expected variability by gender. On multivariate analysis, women had a 48% lower risk of death compared to men (Hazard Ratio 0.52, 95% Confidence interval 0.36 – 0.74, p<0.001). Modeling found that under reasonable assumptions collider-stratification could account for sex-based differences in mortality. ConclusionsIn this large registry of PAH patients new to a care center, men had worse survival than women despite having more favorable baseline characteristics. Collider-stratification bias could account for the observed greater mortality among men.

Incidence and outcomes of kidney replacement therapy for end-stage kidney disease due to primary glomerular disease in Europe: findings from the ERA Registry.

Primary glomerular disease (PGD) is a major cause of end-stage kidney disease (ESKD) leading to kidney replacement therapy (KRT). We aimed to describe incidence (trends) in individuals starting KRT for ESKD due to PGD and to examine their survival and causes of death. We used data from the European Renal Association (ERA) Registry on 69854 patients who started KRT for ESKD due to PGD between 2000 and 2019. ERA primary renal disease codes were used to define six PGD subgroups. We examined age and sex standardized incidence, trend of the incidence and survival. The standardized incidence of KRT for ESKD due to PGD was 16.6 per million population (pmp), ranging from 8.6 pmp in Serbia to 20.0 pmp in France. Immunoglobulin A nephropathy (IgAN) and focal segmental glomerulosclerosis (FSGS) had the highest incidences, of 4.6 pmp and 2.6 pmp, respectively. Histologically non-examined PGDs represented over 50% of cases in Serbia, Bosnia and Herzegovina, and Romania and were also common in Greece, Estonia, Belgium and Sweden. The incidence declined from 18.6 pmp in 2000 to 14.5 pmp in 2013, after which it stabilized. All PGD subgroups had 5-year survival probabilities above 50%, with crescentic glomerulonephritis having the highest risk of death [adjusted hazard ratio 1.8 (95% confidence interval 1.6-1.9)] compared with IgAN. Cardiovascular disease was the most common cause of death (33.9%). The incidence of KRT for ESKD due to PGD showed large differences between countries and was highest and increasing for IgAN and FSGS. Lack of kidney biopsy facilities in some countries may have affected accurate assignment of the cause of ESKD. The recognition of the incidence and outcomes of KRT among different PGD subgroups may contribute to a more individualized patient care approach.

The ERA Registry Annual Report 2021: a summary.

The European Renal Association (ERA) Registry collects data on kidney replacement therapy (KRT) in patients with end-stage kidney disease (ESKD). This paper is a summary of the ERA Registry Annual Report 2021, including a comparison across treatment modalities. Data was collected from 54 national and regional registries from 36 countries, of which 35 registries from 18 countries contributed individual patient data and 19 registries from 19 countries contributed aggregated data. Using this data, incidence and prevalence of KRT, kidney transplantation rates, survival probabilities and expected remaining lifetimes were calculated. In 2021, 533.2 million people in the general population were covered by the ERA Registry. The incidence of KRT was 145 per million population (pmp). In incident patients, 55% were 65 years or older, 64% were male, and the most common primary renal disease (PRD) was diabetes (22%). The prevalence of KRT was 1040pmp. In prevalent patients, 47% were 65 years or older, 62% were male, and the most common PRDs were diabetes and glomerulonephritis/sclerosis (both 16%). On 31 December 2021, 56% of patients received haemodialysis, 5% received peritoneal dialysis, and 39% were living with a functioning graft. The kidney transplantation rate in 2021 was 37 pmp, a majority coming from deceased donors (66%). For patients initiating KRT between 2012-2016, 5-year survival probability was 52%. Compared to the general population, life expectancy was 65% and 68% shorter for males and females receiving dialysis, and 40% and 43% shorter for males and females living with a functioning graft.

Abstract 13633: Modern Treatment Patterns in Incident Pulmonary Arterial Hypertension (PAH) Patients: Real-World Data From the Pulmonary Hypertension Association (PHA) Registry

Purpose: New 2022 European Society of Cardiology/European Respiratory Society PAH guidelines recommend treatment guided by a multi-parameter risk assessment. 1 Patients with low/intermediate risk without cardiopulmonary comorbidities should start dual PAH combination therapy; those with cardiopulmonary comorbidities should be reassessed early for rapid escalation to dual therapy. Initial triple therapy is recommended for high-risk patients. We examined use of dual and triple PAH therapy in the US (before guideline update). Methods: We used the Pulmonary Hypertension Association Registry (PHAR), a prospective US registry of pulmonary hypertension (PH) patients, enrolled within 6 months of their first outpatient visit at one of 54 participating PH care centers in the US, between Sep 2015-Jun 2022. We included adults (≥18 years at enrollment) with incident PAH (newly diagnosed and treated within 6 months of enrollment) and ≥1 follow-up clinic visit post baseline visit. Chronic thromboembolic PH patients were excluded. Results: We analyzed (descriptive statistics) 794 incident patients (baseline characteristics in Table 1). Treatment patterns at baseline (n=794)/last follow-up visit (n=610) were 289 (36.4%)/102 (16.7%) on monotherapy, 419 (52.8%)/314 (51.5%) on dual combination, 83 (10.5%)/179 (29.3%) on triple combination therapy, respectively. Mean time from enrollment to dual and triple combination therapy was 86.1 (standard deviation [SD]: 209.0) and 346.1 days (SD: 430.8), respectively. Conclusions: Among incident PHAR patients, half received initial dual and 10% triple upfront combination therapy. At last follow-up, most (&gt;80%) patients had escalated to dual/triple combination therapies. Clinical Implications: At PH care centers, most incident PHAR patients are escalated to dual and triple therapy (at last follow-up) per current guidelines. Reference 1. Humbert M, et al. Eur Heart J. 2022;43:3618-731.

Regional Variation in Pulmonary Arterial Hypertension in the United States: The Pulmonary Hypertension Association Registry.

Rationale: Pulmonary arterial hypertension (PAH) is a heterogeneous disease within a complex diagnostic and treatment environment. Other complex heart and lung diseases have substantial regional variation in characteristics and outcomes; however, this has not been previously described in PAH. Objectives: To identify baseline differences between U.S. census regions in the characteristics and outcomes for participants in the Pulmonary Hypertension Association Registry (PHAR). Methods: Adults with PAH were divided into regional groups (Northeast, South, Midwest, and West), and baseline differences between census regions were presented. Kaplan-Meier survival analyses and Cox proportional hazards were used to estimate the association between region and mortality in unadjusted and adjusted models. Results: Substantial differences by census regions were seen in age, race, ethnicity, marital status, employment, insurance payor breakdown, active smoking, and current alcohol use. Differences were also seen in PAH etiology and baseline 6-minute walk distance test results. Treatment characteristics varied by census region, and mortality appeared to be lower in PHAR participants in the West (hazard ratio, 0.60; 95% confidence interval, 0.43-0.83, P = 0.005). This difference was not readily explained by differences in demographic characteristics, PAH etiology, baseline severity, baseline medication regimen, or disease prevalence. Conclusions: The present study suggests significant regional variation among participants at accredited pulmonary vascular disease centers in multiple baseline characteristics and mortality. This variation may have implications for clinical research planning and represent an important focus for further study to better understand whether there are remediable care aspects that can be addressed in the pursuit of providing equitable care in the United States.

European chronic kidney disease registries for children not on kidney replacement therapy: tools for improving health systems and patient-centred outcomes.

Chronic kidney disease (CKD) in children, from birth to late adolescence, is a unique and highly challenging condition that requires epidemiological research and large-scale, prospective cohort studies. Since its first launch in 2007, the European Society for Paediatric Nephrology/European Renal Association (ESPN/ERA) Registry has collected data on patients on kidney replacement therapy (KRT). However, slowing the progression of CKD is of particular importance and thus the possibility to extend the current registry dataset to include patients in CKD stages 4-5 should be a priority. A survey was sent to the national representatives within the ESPN/ERA Registry to collect information on whether they are running CKD registries. All the representatives from the 38 European countries involved in the ESPN/ERA Registry participated in the survey. Eight existing CKD registries have been identified. General characteristics of the national registry and detailed data on anthropometry, laboratory tests and medications at baseline and at follow-up were collected. Results provided by this survey are highly promising regarding the establishment of an ESPN CKD registry linked to the ESPN/ERA KRT registry and subsequently linking it to the ERA Registry with the same patient identifier, which would allow us to monitor disease progression in childhood and beyond. It is our belief that through such linkages, gaps in patient follow-up will be eliminated and patient-centred outcomes may be improved.

International comparison and time trends of first kidney transplant recipient characteristics across Europe: an ERA Registry study.

The aim of this study was to provide an overview of age, sex and primary renal disease (PRD) distribution among first kidney transplant recipients across Europe. The European Renal Association (ERA) Registry database was used to obtain data on patients aged 20 years or older receiving their first kidney transplant between 2010 and 2019 from 12 European countries. The numbers and percentages of recipients in each age, sex and PRD group were calculated by country, donor type and year. In total, 99543 adults received a first kidney transplant. Overall, 23% of the recipients were 65 years or older, 36% were female, and 21% had glomerulonephritis and 15% diabetes mellitus as PRD. Compared with deceased donor kidney transplant recipients, living donor kidney transplant recipients were less often 65 years or older (13% versus 26%), more often had glomerulonephritis (25% versus 20%) and less often diabetes mellitus (8% versus 17%) as PRD. We found large international differences, which were most prominent for age and PRD and less prominent for sex. Over time, the largest change in recipient characteristics was observed for the percentage of recipients aged 65 years or older, increasing from 18% in 2010 to 28% in 2019 for all countries combined with a similar trend in most countries. We observed large differences for age and PRD distribution between recipients of living and deceased donor kidneys and between European countries. Over time, the percentage of older first kidney transplant recipients increased.

Clinical characteristics, in-hospital management, and outcomes of patients with in-hospital vs. community-onset ischaemic stroke: a hospital-based cohort study

Lack of high-quality national-level data on in-hospital ischaemic stroke hinders the development of tailored strategies for this subgroup's identification, treatment, and management. We analyzed and compared clinical characteristics, in-hospital management measures, and outcomes, including death or discharge against medical advice (DAMA), major adverse cardiovascular events (MACEs), disability at discharge, and in-hospital complications between in-hospital and community-onset ischaemic stroke enrolled in the Chinese Stroke Center Association registry from August 2015 to December2022. The cohort comprised 14,948 in-hospital and 1,366,898 community-onset ischaemic stroke patients. In-hospital ischaemic stroke exhibited greater stroke severity, higher prevalence of comorbidities, more pre-admission medications, and had suboptimal management measures, for example, the onset-to-needle time within 4.5h (83.3% vs. 93.1%; difference,-9.8% [-11.4% to-8.3%]), and antithrombotics at discharge (78.6% vs. 90.0%; difference,-11.4% [95% CI,-12.1% to-10.7%]). After adjusting for covariates, in-hospital ischaemic stroke remains associated with higher risks of unfavorable outcomes, including in-hospital death/DAMA (13.9% vs. 8.6%; adjusted risk difference [aRD], 2.2% [95% CI, 1.8%-2.7%]; adjusted odds ratio [aOR], 1.35 [95% CI, 1.25-1.45]), MACE (12.6% vs. 6.5%; aRD, 4.1% [95% CI, 3.5%-4.7%]; aOR, 1.68 [95% CI, 1.52-1.85]), and complications (23.7% vs. 12.1%; aRD, 6.5% [95% CI, 5.1%-7.9%]; aOR, 1.72 [95% CI, 1.64-1.80]), except for disability at discharge (41.1% vs. 33.1%; aRD, 0.4% [95% CI,-1.7% to 2.5%]; aOR, 0.99 [95% CI, 0.88-1.11]). In-hospital ischaemic stroke demonstrated more severe strokes, worse vascular risk profiles, suboptimal management measures, and worse outcomes compared to community-onset ischaemic stroke. This emphasizes the urgent need for improved hospital systems of care and targeted quality improvement initiatives for better outcomes in in-hospital ischaemic stroke. National Key R&D Programme of China and Beijing Hospitals Authority.

#3524 INCIDENCE AND OUTCOMES OF KIDNEY REPLACEMENT THERAPY FOR END-STAGE KIDNEY DISEASE DUE TO PRIMARY GLOMERULONEPHRITIS IN THE ERA REGISTRY

Abstract Background and Aims Primary glomerulonephritis (PGN) is among the leading causes of end-stage kidney disease (ESKD) in patients initiating kidney replacement therapy (KRT). To date, most studies have examined KRT outcomes from all PGN subgroups combined. Using data from the European Renal Association (ERA) Registry we examined trends and outcomes in individuals with PGN and its subgroups commencing KRT. Firstly, we described the incidence of KRT for ESKD due to PGN for all countries combined and by country; and secondly, we compared patient characteristics, survival outcomes, and causes of death. Method We used data from 31 national and regional renal registries providing individual patient data to the ERA Registry for at least three years between 2000-2019. PGN was categorized into six subgroups based on the ERA primary renal disease codes: Immunoglobulin A nephropathy [IgAN], membroproliferative glomerulonephritis [MPGN] (type I and type II), membranous nephropathy [MN], focal segmental glomerulosclerosis [FSGS], crescentic glomerulonephritis [crescentic GN], and other PGN (histologically examined and histologically not examined). The age-and-sex-standardized incidences were estimated using the 2015 EU28 population as a reference. Joinpoint regression analysis was used to determine the annual percentage change (APC) in the incidence. Kaplan Meier and Cox regression analyses were used for the survival analyses. We adjusted for age, sex, KRT initiation era, and country. Results In total, 69,854 individuals started KRT due to PGN between 2000-2019, of whom 27.8% had IgAN, 15.8% FSGS, 8.5% MPGN, 5.8% crescentic GN, and 4.5% MN. The remaining 37.7% were categorized as” other PGN’’ (14.1% not biopsied). The standardized incidence of KRT due to PGN was 16.6 per million population (pmp), ranging from 8.8 pmp in Serbia to 20.0 pmp in France. The incidence was the highest for IgAN (4.6 pmp) and FSGS (2.6 pmp) particularly in age group 65-74 year. The incidence of KRT due to PGN [APC: -1.8% (-2.2; -1.4)] declined between 2000-2013, then it stabilized. Conversely, the incidence of KRT due to IgAN [APC: 5.1% (2.7;7.6)] between 2012-2019 and due to FSGS [APC: 3.1% (2.3-3.8)] between 2000-2019 increased. During a five-year follow-up 8,928 patients died. The five-year survival probabilities varied from 57.0% for crescentic GN to 83.6% for IgAN. The risk of death was highest in crescentic GN [The adjusted hazard ratio: 1.8 (95% confidence interval: 1.6-1.9)] compared to IgAN. Cardiovascular disease was the most common cause of death (33.9%) followed by infection (18.5%). Conclusion The incidence of KRT due to PGN was highest in IgAN and FSGS and varied largely across the European countries. The number of non- histologically examined PGN cases remains high, especially in Eastern Europe, which may reflect a lack of renal biopsy facilities which in turn hamper reporting of the true histological diagnosis. There was an initial decline in the incidence of KRT due to PGN, followed by stabilization. This could imply advances in the management protocols with better prognosis. Further studies are needed to explain the observed difference in the incidence over time and to identify factors leading to less initiation of KRT among patients with PGN.

#4150 INTERNATIONAL COMPARISON AND TIME TRENDS OF FIRST KIDNEY TRANSPLANT RECIPIENT CHARACTERISTICS ACROSS EUROPE: A STUDY FROM THE ERA REGISTRY

Abstract Background and Aims Large international differences exist in the kidney transplantation (KT) rate across Europe. Countries might transplant a different group of end-stage kidney disease (ESKD) patients, but up to now an overview of recipient characteristics in first kidney transplant recipients in the different European countries is lacking. Therefore, the aim of this study was to give an overview as well as time trends in age, sex and primary renal disease (PRD) distribution of first kidney transplant recipients in Europe. Method The European Renal Association (ERA) Registry database was used to obtain data on adult patients receiving their first KT between 2010 and 2019 from 12 European countries. The numbers and percentages of recipients in each age, sex and PRD group were calculated by country, donor type and year. The first KT rate was calculated by dividing the number of first KTs by the adult general population counts and multiplied by one million. Results In total, 99,543 patients received a first KT between 2010 and 2019 for all countries combined. The percentage of recipients aged 65 years and older varied greatly between countries, with Bosnia and Herzegovina having the lowest percentage (1%), and the Netherlands, Spain and Norway having the highest percentages (&amp;gt;25%). Similar results were found for deceased donor first KT, but for living donor first KT Spain was no longer among the countries with the highest percentage of recipients aged 65 years and older. The percentage of female recipients ranged between 33% in Austria and 38% in the Netherlands for total first KT, between 33% in Austria and 38% in Denmark for deceased donor first KT and between 30% in Austria and 39% in the United Kingdom for living donor first KT. When comparing the distribution of PRDs, Bosnia and Herzegovina had a relative high percentage of recipients with glomerulonephritis (35%), while Finland had a high percentage of recipients with diabetes mellitus (29%) and the Netherlands and Norway a high percentage of recipients with hypertension / renal vascular diseases (17% and 22% respectively). This distribution was similar for deceased and living donor first KT recipients. Over time, the most prominent change regarding the recipient characteristics was observed for the age of the recipient, with an increasing proportion of recipients aged 65 years and older from 18% in 2010 to 28% in 2019 for all countries combined, and with a similar trend observed in most countries. Conclusion We observed large differences in the recipient characteristics at first KT between European countries and over time, especially for the recipient age and PRD. These new insights in the distribution of recipient characteristics in the first KT population could elucidate which ESKD patients receive a KT.