Establishing Registries for Kidney Health Advocacy

In: Hole , B , Evans , K , Pyart , R , Davids , R , Gonzalez Bedat , M C , Jager , K J , McDonald , S , Pisoni , R , Rosa Diez , G , Saran , R & Caskey , F 2019 , ' Establishing Registries for Kidney Health Advocacy ' , The International Society of Nephrology's World Congress of Nephrology , Melbourne , Australia , 12/04/19 - 15/04/19 .

Abstract

Background The ISN has stressed the need for integrated worldwide renal care. Registries will play a vital role by defining disease burden, monitoring treatment and outcomes, but vary in coverage and structure. This study describes the current scope and technical aspects of international renal registries. Methods The ISN established 'Sharing Expertise to support the set-up of Renal Registries' (SharE-RR) to support countries developing a registry (www.theisn.org/advocacy/share-rr). Surveys were developed to collect geographical and modality coverage as well models of data collection, technical, governance and funding information from national and international registries (SurveyMonkey, English language only). Piloting and iterative development was undertaken with 6 registries in 3 continents. In 2018 the survey was emailed to 126 contacts provided by members from the African, Australian and New Zealand, ERA-EDTA, Latin American and United States renal registries. Surveys were administered in batches with up to 5 reminders sent to non-responders. Respondents were asked to forward the survey to other registries covering renal replacement therapy in their country, where appropriate. Data were analysed using Microsoft Excel. National/regional survey results •91 contacts responded from 85 registries in 78 countries and 6 countries without established registries (72% response rate) •Of these 85 registries: •73 (86%) had national coverage •12 (14%) covered a region only Adults [Figure 1] •84 (99%) registries reported coverage of adults receiving haemodialysis (HD) •78 (92%) peritoneal dialysis (PD) •63 (74%) kidney transplant (Tx) •60 (71%) registries covered all three modalities and 5 (6%) covered just one Children •64 (75%) reported coverage of children receiving HD •56 (66%) PD •51 (60%) Tx Chronic/acute kidney disease •19 (22%) reported coverage of chronic kidney disease •8 (9%) acute kidney injury Data collection •44 (52%) registries used web-forms to assimilate data •31 (36%) paper-based •24 (28%) email •19 (22%) direct extraction from clinical systems •14 (16%) a secured data line •4 (5%) billing data •39 (46%) used a mixture Economy •46 (54%) responses were from high-income economies, 25 (29%) from upper-middle and 13 (15%) from lower-middle economies. Burundi was the sole low-income country •51% of the world's high-income countries, 46% of higher-middle, 28% of lower-middle and 5% of low-income countries reported a registry Funding •45 registries (53%) declared funding direct from government (61% of high-income, 48% of upper middle-income, 38% of lower middle-income and 0% of low-income responders) •Overall, 39 (46%) registries reported government as their main source of funding •Professional bodies/societies were the main funder for 18 (21%) registries and provided funding to 26 (31%) registries •7 registries (8%) reported no funding Conclusion The 2018 SharE-RR survey highlights international inequality in the ability to monitor access to, quality and outcomes of renal care. The most comprehensive registries are found in higher-income nations, which are more likely to receive government support. Scarce evidence of registry activity was found in low-income economies. Collection of data relating to individuals not receiving dialysis is rare, which precludes estimation of true disease burden. Paediatric coverage seems less complete than for adults, though the survey may not have reached all registries. Developing renal registries in resource constrained economies is critical to developing effective preventative, renal-replacement and supportive care services. The SharE-RR project has been developed to make progress in this vital area.