ISN President and Patient Ambassadors Feature in Film and Article on Chronic Kidney Disease
On September 28, the NCD Alliance launched “Facing Forward,” a series of films and articles produced by BBC StoryWorks Commercial Productions. The series is designed to raise awareness of noncommunicable diseases by hearing directly from patients around the world.
We are pleased to share that ISN President Agnes Fogo features in the film on CKD in the series. In addition, the stories of ISN patient ambassadors Abigail Ashley (Ghana), Fabrice Huré (France), Miracle Okon Ekpo (Nigeria), and Vicki Grey (Australia) feature in an article produced for AstraZeneca by BBC StoryWorks highlighting the global experience of CKD.
Using ISN social media posts, please share these patient stories and the documentary film to help increase understanding of CKD and its impact.
Read Patient Ambassador Stories on Living Well with Kidney Diseases
To raise awareness of the patient experience globally of kidney disease, patient ambassadors Manvir Victor (Malaysia) and Verónica Martínez (Mexico) share personal accounts of living with kidney conditions.
Manvir Victor was diagnosed with kidney disease in his mid-thirties and had to begin dialysis immediately. The experience initially had a dramatic effect on his emotional and physical well-being, and ultimately led him to become an active patient advocate.
Verónica Martínez was born with only one kidney and contended with kidney infections and additional health issues throughout her childhood and adolescence. Despite these challenges, she sought appropriate treatment enabling her to travel and live a satisfying and independent life.
Register for the Kidney Ethics Webinar Series: Autonomy in Kidney Care - Ethical and Practical Challenges
The American Society of Nephrology (ASN), the European Renal Association (ERA), and the International Society of Nephrology (ISN) are delighted to announce the latest webinar in their joint series on kidney ethics, Autonomy in Kidney Care - Ethical and Practical Challenges.
Please join the debate on October 21, 2021 at 2 p.m. CEST to learn more about these important issues.
We spoke to the outgoing chair of the KRA, Ahmed Twahir, about ongoing local initiatives to raise kidney health awareness and improve kidney care services in the region.
The KRA collaborates with the Kenya Nephrology Nurses Association to conduct annual outreach initiatives in different parts of the country to generate public awareness of the risks associated with kidney disease.
Position Paper on Emergency Preparedness to Reduce Future Impact of Pandemics Is the Focus of GCCH Meeting
The Global Circulatory Health Coalition's (GCCH) October meeting, “Responding to COVID-19: Circulatory Health in Crisis,” focused on the recent launch of the position paper, “Preventing the Next Pandemic: The Case for Investment in Circulatory Health.” Past ISN President Vivekanand Jha was present at the virtual meeting and moderated one of the sessions.
The paper reflects the GCCH's efforts to improve NCD services for all patients, including those with kidney diseases. It calls on WHO member states to reduce the impact of future pandemics on patients by adopting a proposed Strategic Framework for Emergency Preparedness.
The ISN Hosts European Kidney Health Alliance Meeting to Promote Kidney Care Within the EU
The ISN hosted the European Kidney Health Alliance's (EKHA) Board of Directors, September 21-22, 2021. EKHA leaders met virtually with the Members of the European Parliament (MEP) Group for Kidney Health on September 22 to discuss the role of the European Union in promoting kidney health and improving access to kidney disease treatment in LMICs through its Africa-EU and Africa, Caribbean, and Pacific (ACP) partnerships.
The EKHA urged the MEP Group for Kidney Health to help develop forward-looking policy solutions within EU programs to better integrate and recognize chronic kidney disease. They recommended improving EU screening programs for kidneys and other noncommunicable diseases, promoting transplantation and home-based therapies to improve patients' quality of life, and expanding research and funding for better innovation in kidney replacement therapy.
New Global Collaboration to Accelerate Treatments for Kidney Disease
The ISN and the George Institute for Global Health have signed a Memorandum of Understanding (MOU) to develop a network of patients with kidney disease willing to participate in clinical research projects, accessible through a single global CKD platform.
The aim of the Global Kidney Patient Trials Network (GKPTN) is to accelerate the development of new treatments for kidney disease, which may ultimately benefit millions of people globally.
Finding participants who are suitable for and willing to participate in clinical studies is time-consuming. The GKPTN collaboration will help to establish a global network of willing patients who can be contacted quickly when an appropriate study becomes available. In doing so, the network will expand research capacity and connect the global kidney disease community. It could also help facilitate more rapid translation of new interventions for kidney disease into clinical practice.
To achieve the key objectives of this collaboration, a global umbrella network of established patient trials networks/ registries, “The ISN Patient Trials Network”, will also be created.
By collaborating with other established ventures worldwide, GKPTN will be the initial member of the ISN Patient Trials network.
Read Chapter Three of the ISN-ACT Narrative-Based Clinical Trials Toolkit on Participating as a Trial Site
The third chapter of the Narrative-Based Clinical Trials (ISN-ACT) Toolkit uses a fictional clinical discussion to show what it takes to become a trial site using a fictional clinical discussion. A group of nephrologists aiming to become a trial site for an international clinical study on Chronic Kidney Disease of Unknown Etiology (CKDu) share their experiences as they confront various issues and overcome the challenges involved.
Priya Pais, St. John’s Medical College, Bangalore, India Costs and Outcomes of PEdiatric (COPE) CKD - a Multicenter Prospective Study from Three Low/Lower-middle-income Countries
Pedro C. Emem-Chioma, University of Port Harcourt Teaching Hospital, Port Harcourt, Nigeria Goal-directed Incremental Peritoneal Dialysis in Nigeria
Verônica Torres Costa e Silva, Instituto do Câncer do Estado de São Paulo, São Paulo, Brazil Prospective Evaluation of the Long-term Impact of Anticancer Treatment on the Kidney Function of Cancer Patients
The ISN Clinical Research Program supports initiatives that build capacity for clinical research to help detect and manage NCDs such as CKD and AKI in low and middle-income countries. Find out more here.
Green Nephrology, Nanotechnology, Genome Editing, and Patient Advocacy: Discover the WCN’22 Plenary Topics and Speakers
Be part of a global gathering to exchange the latest in kidney science and clinical applications.
Put Your Story on the Map! Submit a Film to the ISN Community Film Event
The ISN Community Film Event, showcasing global stories on kidney care, now has an interactive map highlighting the diverse scope of the competition and offering a further opportunity for worldwide visibility.
The ISN Presents Eastern and Central Europe Pioneer Award and Supports CME Course at BANTAO 2021
The 16th BANTAO Congress (Balkan Association of Nephrology, Dialysis, and Artificial Organs) will be in hybrid format from October 29-31, 2021, in Tirana, Albania.
The event provides a fitting platform to present László Rosivall with the ISN 2021 Pioneer Award for the Eastern and Central Europe region on October 30, 2021, at 11:10 a.m. CEST. ISN President Agnes Fogo will introduce the award ceremony, and Rumeyza Kazancioglu, former ISN Regional Board chair, will highlight László's achievements.
The ISN-supported CME Course, also endorsed by the European Renal Association (ERA), ‘How to slow progression of CKD and its complications,’ will be held the same day with participation from ISN speakers.
The Expanding Utilization of Home Dialysis: Findings of the International Home Dialysis Roundtable, Brussels, Belgium, 28/10/2021-28/10/2021 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 1 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in the educational activity.
Please note the credit can only be claimed for attendance during the live webinar.
Mallika Mendu, Simon Davies, Daniel Gallego, and Vivekanand Jha will examine best practices, successful strategies, and overcoming challenges in home dialysis based on findings from the International Home Dialysis Roundtable (Roundtable supported by Baxter).
Put Forward Your Research Article for a KI-ISN Early-Career Researcher Award
In recognition of the valuable contribution made by early-career researchers worldwide, Kidney International (KI) and the ISN will select four of the best original research papers published in KI in 2021 to receive a KI-ISN Early-Career Researcher Award.
Discover the 2019/2020 winners and their research papers here.
The winners of these awards (two basic and two clinical science publications) will receive 500 USD each and be invited to present their papers at the 2022 World Congress of Nephrology.
Shared Decision-making in Hemodialysis Vascular Access
Shared decision-making (SDM) is not broadly applied in hemodialysis vascular access planning despite its ethical imperative. Awareness is growing that commonly delivered prescriptive fistula-centered recommendations for vascular access care might not always be relevant to an individual’s goals of care.
This article reviews the current state of vascular access practice and presents arguments why SDM is necessary for its planning. Barriers and potential solutions to SDM implementation are discussed as well as possible systems of physician-patient participation in the decision-making process of hemodialysis vascular access practice.
Development of an International Delphi Survey to Establish Core Outcome Domains for Trials in Adults with Glomerular Disease
Outcomes relevant to treatment decision-making are inconsistently reported in trials involving glomerular disease. The authors present a consensus-derived set of critically important outcomes designed to be reported in all future trials through an online, international, two-round Delphi survey in English.
The most important outcomes for patients/caregivers and health professionals were the need for dialysis or transplant, kidney function, death, cardiovascular disease, remission-relapse, and life participation. Consistent reporting on these outcomes in all trials involving glomerular disease is hoped to improve patient-centered decision-making.
Sarcopenia and Frailty - Challenges in Mainstream Nephrology Practice
Sarcopenia, characterized by the loss of muscle mass and function, and frailty - a multi-system impairment associated with increased vulnerability to stressors - are prevalent in the chronic kidney disease (CKD) population and commonly associated with a wide range of adverse health outcomes.
This review presents a comprehensive overview of these conditions in CKD patients and the widely recommended interventions to maintain skeletal muscle mass and strength, notably through exercise training and nutritional supplementation.