Renal Association

A summary of recent activity at the UK Renal Registry, the part of the UKKA that collects, analyses and reports data on people receiving treatment for kidney disease across the UK

The Medical Device Regulation (MDR) was adopted in 2017 to replace the Medical Device Directive. Key changes included more rigorous clinical evidence requirements, increased scrutiny of notified bodies and improved traceability of medical devices, with the overarching aim to improve their safety and quality. For chronic haemodialysis, the impact of the MDR on devices has been substantial, resulting in niche devices being no longer available, and critical shortages, especially in paediatric nephrology. The EuDial board discussed these developments and concluded that the MDR has had a clear negative impact on innovation. In conjunction with other emerging economic macro-trends, this development heightens the potential for disruptions within critical supply chains. We offer actionable recommendations to optimize the benefits of the MDR and to minimize unintended consequences.

BackgroundThere is a need for a user-led, evidence-based digital application (app.) that meets the identified information and support needs and preferences of young people and young adults aged 12–35 years (YP/YA) with Nephrotic Syndrome (NS) in the United Kingdom (UK). The password protected novel Nephrotic Syndrome Trust (NeST) app was therefore co-designed with YP/YA with NS to empower them to: access news of NS related events, take more control of their treatment and feel confident in sharing and accessing their data. The app allows YP/YA with NS to record regular urine dipstick readings, blood pressure, weight, temperature, medications, immunisations, symptoms (e.g. swollen feet), relapse or remission episodes, and the name of their renal unit. Additional features include an appointment diary to record feedback from their renal multidisciplinary team, treatment information and hospital admission episodes. The software was approved for release on iOS & Android app stores and the NHS Digital verification programme, meaning that users can be identified against their NHS records. The aim of the survey was to evaluate the NeST App from the perspective of YP/YA with NS.MethodsThrough a consultative process, an online survey involving a combination of closed and open-ended questions was created and circulated via social media and email to target users of the app.ResultsTwenty YP/YA with NS aged 12 years and older tested the app, completed the survey and provided quantitative and qualitative data. All found this app helpful, and easy to use and all would use it in future as part of standard practice.ConclusionsThese data provide important feedback and suggestions for further app refinement and will integrate it with current national data collection via the UK Renal Registry (UKRR). To build on this collaborative project the developers will continue to collaborate with patients and health care professionals to ensure the app is a continually evolving and relevant resource, providing a voice for those living with NS. The app technology could potentially be rebooted and relaunched at minimal cost to support patients with other kidney conditions.Clinical trial numberNot applicable.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12882-025-04684-1.

Communities of practice groups consist of health professionals with a shared interest, who meet regularly to use experiential learning and communicate ideas to collaborate with a unified goal of improving practice in their area of interest

Colorectal cancer (CRC) remains a leading global health challenge, and natural products are increasingly explored for their multi-targeted therapeutic potential. Litchi chinensis seed extract (LCSE) has shown promising anti-cancer activity in vitro, though its in vivo effects remain underexplored. LCSE was analyzed by colorimetric assays and HPLC to quantify the phytochemical composition. Nude mice bearing HT-29 or SW480 xenografts were orally administered LCSE (0.1 or 0.6 g/kg) daily for 14 days. Tumor volume was measured, and immunohistochemistry was used to assess EGFR, p21, p53, Ki-67, CEA, CK20, CDX2, and Bax expression. Phytochemical profiling demonstrated LCSE contains abundant phenolics and flavonoids, with gallic acid as a predominant constituent, underscoring the potential bioactive properties. LCSE significantly inhibited tumor growth in HT-29 xenografts and dose-dependently reduced EGFR, p21, p53, cell cycle proteins and proliferation/differentiation markers. In SW480 tumors, inhibitory effects were evident primarily at the higher dose, with limited reduction in p53 expression. Bax levels remained unchanged in both models, indicating a non-apoptotic mechanism. No systemic toxicity was observed in treated mice. LCSE exhibits dose-dependent anti-tumor activity in CRC xenografts, likely mediated through suppression of proliferation and modulation of key regulatory proteins rather than apoptosis. These findings support LCSE as a safe, multi-target botanical candidate for CRC intervention and justify further mechanistic and translational studies.

The Mainstreaming Addiction Treatment Act removed the separate registration requirement to prescribe scheduled medications for maintenance or detoxification treatment, creating an opportunity to utilize community pharmacists' expertise and accessibility to expand access to medications for opioid use disorder (MOUD). This study aimed to develop pharmacist prescribing models of care within community pharmacies. Data were collected via interviews with community pharmacists and pharmacy technicians, treatment providers, and people with lived experience in Washington State from January to May 2024. Interviews were analyzed using a rapid content analysis approach guided by the Practice, Robust Implementation and Sustainability Model and existing evidence-based models of care for MOUD in primary care settings. The research team utilized the themes to develop models of care with input from an interdisciplinary advisory panel. Thirty-one interviews were conducted with 9 community pharmacy staff, 11 treatment providers, and 11 people with lived experience. In total, 21 themes were identified, including 8 themes regarding intervention characteristics, 5 regarding recipients, 5 regarding implementation and sustainability infrastructure, and 3 regarding external environment. Within intervention characteristics, 3 themes were identified regarding medication therapy, 3 regarding education, 1 regarding coordination of care, and 1 regarding psychosocial services. Two models of care were developed: one for MOUD initiation and another for maintenance or ongoing treatment. This study resulted in the development of models of care for MOUD initiation and maintenance at community pharmacies. Future research is needed to evaluate the effectiveness of these models of care.

Patients with acute kidney disease (AKD) may need treatment by hemodialysis and/or apheresis, which is often started in haste due to the life-threatening condition. To illuminate patients' lived experiences of being in acute need of such therapy due to AKD, we performed semi-structured interviews analyzed with qualitative content analysis. Eleven patients out of 104 were eligible and completed interviews. Six main categories were found - shock and emotional chaos, loneliness in an unfamiliar situation, a need for tailored information, emotional support from next of kin, the dialysis and/or apheresis experience varied, and the disease-conditioned life. An overarching theme emerged as, 'Will I survive? Will I be cured?' Clear and repeated information and personalized contact were requested to reduce anxiety and give hope during a time of crisis.

血液透析患者では塩分・水分・たんぱく質・カリウム・リンと食事制限が多く，患者の心理的負担が大きい．しかし，うっ血性心不全や高カリウム血症は日常警戒すべき合併症である．透析患者では尿中へのカリウム排泄がないのでカリウム摂取の多寡が直接血清カリウム値に反映すると単純に考えられ，カリウム制限食が伝統的に勧められてきた．最近，透析患者でもカリウム摂取量と血清カリウム値は相関しないことが報告されている．栄養障害を有する透析患者（とくに高齢者やさまざま合併症を有する）ではカリウム制限が更なるたんぱく質の摂取低下を惹起し，生活の質（QOL）低下・予後不良とも関連している可能性がある．血液透析患者のカリウム摂取制限は患者個々の状況を十分に検討し，日頃から良好なコミュニケーションがとれているスタッフ（看護師，管理栄養士）を交えた医療チームで対処すべきである．

ABSTRACTWith the increasing frequency and severity of disasters and the increasing number of patients living with kidney disease, on dialysis and with transplants around the world, the need for kidney care in humanitarian settings is increasing. Almost all humanitarian emergencies pose a threat to kidney health because all treatments are highly susceptible to interruption, and interruption can be deadly. Providing support for people requiring dialysis in humanitarian settings can be complex and is associated with many trade-offs. The global kidney care community must become familiar with the ethics, principles and duties essential to meeting the overarching goals of ethical and effective disaster relief. Ethics principles and values must be considered on the individual, public health and global levels. The wellbeing of a single patient must be considered in the context of the competing needs of many others, and optimal treatment may not be possible due to resource constraints. Public health ethics principles, including considerations of triage and resource allocation, maximization of benefit and feasibility, often become directly relevant at the bedside. Individuals delivering humanitarian relief must be well trained, competent, respectful and professional, while involved organizations need to uphold the highest professional and ethical standards. There may be dissonance between ethical guidance and practical realities in humanitarian settings, which for inexperienced individuals may present significant challenges. Sustaining dialysis care in emergencies brings these issues starkly to the fore. Preparedness for dialysis in emergencies is an ethical imperative that mandates multisectoral stakeholder engagement and action, development of surge response plans, clinical and ethics guidance, and transparent priority setting. This manuscript outlines common ethics challenges and considerations that apply in all humanitarian actions, and illustrates their relevance to kidney care as a whole, using examples of how these may apply to dialysis and kidney disaster relief efforts in humanitarian settings.

ObjectiveTo assess the feasibility of identifying markers of health-seeking behaviour and healthcare access in UK electronic health records (EHR), for identifying populations at risk of poor health outcomes and adjusting for confounding in epidemiological studies.DesignCross-sectional observational study using the Clinical Practice Research Datalink Aurum prelinked to Hospital Episode Statistics.SettingIndividual-level routine clinical data from 13 million patients across general practices (GPs) and secondary data in England.ParticipantsIndividuals aged ≥66 years on 1 September 2019.Main outcome measuresWe used the Theory of Planned Behaviour (TPB) model and the literature to iteratively develop criteria for markers selection. Based on this we selected 15 markers: those that represented uptake of public health interventions, markers of active healthcare access/use and markers of lack of access/underuse. We calculated the prevalence of each marker using relevant lookback periods prior to the index date (1 September 2019) and compared with national estimates. We assessed the correlation coefficients (phi) between markers with inferred hierarchical clustering.ResultsWe included 1 991 284 individuals (mean age: 75.9 and 54.0% women). The prevalence of markers ranged from <0.1% (low-value prescriptions) to 92.6% (GP visits), and most were in line with national estimates; for example, 73.3% for influenza vaccination in the 2018/2019 season, compared with 72.4% in national estimates. Screening markers, for example, abdominal aortic aneurysm screening were under-recorded even in age-eligible groups (54.3% in 65–69 years old vs 76.1% in national estimates in men). Overall, marker correlations were low (<0.5) and clustered into groups according to underlying determinants from the TPB model.ConclusionOverall, markers of health-seeking behaviour and healthcare access can be identified in UK EHRs. The generally low correlations between different markers of health-seeking behaviour and healthcare access suggest a range of variables are needed to capture different determinants of healthcare use.