In This Issue:
- Inspirational interview with Prof. Pierre Cochat, former IPNA President
- Interview with Dr. Robin Erickson, the Member at Large of the Specific Priorities in Low Resource Countries
- Feedback on the World Kidney Day
- New partnership between IPNA and Health Volunteers Overseas
- Invitation to the next ESPN-IPNA Junior Master Classes: Don´t miss the deadline to register!
- Update from the IPNA Juniors Committee
- IPNA Guidelines Workshop synopsis
- New joint initiative of ISN and IPNA: Grand Rounds in Pediatric Nephrology
- The AAP, ASPN & NKF Patient Education Collaborative
- Update on IPNA Registry and on the new guidelines in progress
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Dear Members and Friends
Congratulations to this year’s winners of the World Kidney Day Campaign, Dr Nodira Murtalibova from Uzbekistan and Dr Suprita Kaira from India. The 11 project submissions received reflects well on the efforts made by our IPNA members in improving the care of children with chronic kidney disease worldwide!
IPNA is also embarking on several new initiatives this year, including a partnership with the American Society for Pediatric Nephrolgoy and Health Volunteers Overseas to support training and education for doctors in low-resource countries. You can read more about these programs in this issue of the newsletter.
The recently concluded IPNA Evidence-Based Clinical Management in Pediatric Nephrology Workshop held in conjunction with the 14th Asian Congress of Pediatric Nephrology was a resounding success, and our members can look forward to new IPNA guideline publications this year. Finally I would like to take this opportunity to welcome our new co-Editor-in-Chief, Dr Joseph Flynn who will be working together with Dr Lesley Rees to take our journal Pediatric Nephrology to new heights.
With Warm Regards,
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 Interview with Prof. Pierre Cochat
"My passion is linking people and creating networks by combining missions and friendship. IPNA gave me such an opportunity by connecting South, North, West and East, irrespective of culture, religion, resources, politics, language, etc. Any action we have developed has pushed pediatric nephrology in this way."
Professor Pierre Cochat was the President of IPNA from 2013 to 2019. In the interview Prof. Cochat reflects the achievements and challenges during his Presidency term and his focus on under-resourced countries.
1. There were many achievements made during your term as President of IPNA. Can you share with us which achievements you are most proud?
The revision of our Constitution was my first priority: i) the term of the president and treasurer has been reduced to 3 years, referring to most international scientific societies; ii) IPNA organization has been clearly based on 7 regional societies, and more seats were offered to Asia, Africa and Latin America to better fit the world population; this has allowed combined membership between IPNA and regional societies; iii) juniors have been added to the council; and iv) the voting process has been changed, using electronic ballot, therefore allowing better participation of all IPNA membership. As a complement to the Constitution, we wrote a Manual of Operations, in order to promote mission continuity among councilors. Another priority was to involve all council members in IPNA activity/impact through an increased number of committees.
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Meet IPNA Members: Robin Erickson (NZ)
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1. What has brought you to the field of pediatric nephrology?
That’s a short question, with a long answer, mainly because I feel like there were so many things that came together to make it the right fit. First of all, my background prior to even going to medical school was in physiology and I always found renal physiology fascinating. With that said, when I started medical school I would never have said that I was a budding nephrologist. That realization came about in medical school at the University of Alberta where I interacted with pediatric nephrology mentors who really demonstrated how fantastic a discipline it is. I love the breadth of patients that we get to see, developing long term relationships with patients, being able to think through the first principles of the physiology and come to an understanding of the pathology, and having therapies like dialysis and transplant that can save lives. I can’t understand why anyone would choose another field!
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World Kidney Day I March 11, 2021
The IPNA Council is pleased to announce the winners of the 2021 World Kidney Day campaign.
After evaluating the 11 projects presented, the jury selected the following winners who will receive the financial grant for the development of their projects:
- Educational and screening program by Nodira Murtalibova from Uzbekistan.
- A multicentric prospective assessment of Quality of life in adolescents with CKD by Suprita Kalra from New Delhi, India.
The IPNA Council also wants to thank Ana Navarro and Irma Del Moral (Mexico), Anabella Colazo (Argentina), Bezaye Abebe Bekele (Ethiopia), Macarena Gajardo (Chile), Elsa Lara and María Colina (Venezuela), Randall Lou-Meda (Guatemala) and the Pediatric Nephrology Society of the Philippines for presenting their projects.
We are very grateful to all the dedicated individuals, hospitals, organizations and supporters who organized / participated in WKD activities this year.
Florencio McCarthy
IPNA World Kidney Day Committtee Chair
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Become a Health Volunteer! New IPNA-ASPN-HVO Partnership
In partnership with the American Society for Pediatric Nephrology (ASPN) and the International Pediatric Nephrology Association (IPNA), Health Volunteers Overseas (HVO) is developing an exciting new initiative to support pediatric nephrology education and training in low-resource settings. We are currently seeking nephrologists with an interest in e-volunteering (virtual lectures, online case discussions) at Angkor Hospital for Children (AHC) in Siem Reap, Cambodia. For more information, please contact info@hvousa.org
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Join the next IPNA Webinar on May 6
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IPNA-ESPN Junior Master Classes: Applications Opened
Dear friends and colleagues,
We are proud to announce our Second IPNA-ESPN Master for Junior Classes (Third Cycle)!
This year, and concerning COVID-19 (never-ending) pandemic, it will be prepared to be held online on 11-12 September 2021, close to ESPN Annual Meeting.
For this Second Class, we are planning a 2-day course, and will review latest updates on Cystinosis, Bartter and Gitelman syndrome, IgA and Henoch-Schoenlein Purpura nephritis, SLE nephritis, Renal involvement in vasculitis, Steroid Sensitive and Steroid Resistant Nephrotic syndrome, Hemolytic Uremic syndrome, C3 Glomerulopathies, Post infectious Glomerulonephritis, Nephrocalcinosis and Urolithiasis, Disorders of Calcium and Magnesium metabolism, Epidemiology of Renal diseases and, additionally, plan an Interactive Clinico-Pathology session. Please find the preliminary program here.
We will accept up to 100 applications. This course attendance is free of charge, ESPN updated membership is mandatory. To become an ESPN member or renew your ESPN membership, please follow this link
For application procedure, you can send your short CV (birthday mandatory) to Prof. Rezan Topaloglu (rezantopaloglu@hacettepe.edu.tr ) or to Dr. Ana Teixeira (anafteixeira@gmail.com ).
Deadline for applications – May 31st 2021.
For more and updated information, please visit our ESPN website.
With our best regards,
Prof. Rezan Topaloglu (ESPN President)
Prof. Elena Levtchenko (ESPN Education Committee)
Prof. Hui Kim Yap (IPNA President)
Dr. Ana Teixeira (Junior Represent for ESPN)
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Another IPNA Guidelines in Progress: Meet the aHUS Working Group
Atypical hemolytic uremic syndrome (aHUS) is a rare, complement-driven thrombotic microangiopathy (TMA). With the advent of the complement C5 antibody eculizumab, outcomes of aHUS patients have significantly improved including outcomes of patients with kidney transplants. Given the rarity of aHUS and the resulting lack of randomized controlled trials, international treatment guidelines are currently not available and treatment recommendations are typically based on expert opinion. In addition, access to the prohibitively expensive eculizumab is limited to economically privileged countries thus creating an inacceptable and unjust global imbalance with respect to the management of aHUS patients.
On this background and given its focus on the management of rare kidney diseases, IPNA initiated the development of clinical practice recommendations (CPRs) for aHUS. As for other IPNA CPRs, the new aHUS CPR will be developed applying the GRADE approach using PICO (population-intervention-comparator-outcome) questions on diagnosis and treatment of aHUS, will be based on information extracted from the available literature graded by evidence (“evidence tables”), and will eventually be published.
Christopher Licht
IPNA aHUS Guidelines Working Group Leader
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IPNA Juniors Committee
IPNA Juniors committee was launched in 2014 with the purpose to establish strong links between IPNA and early career pediatric nephrologists from different regions around the world.
This working group comprises one representative from each of the seven regional societies, at present, Ana Teixeira (Portugal,ESPN and Chair of the committee), Isa Ashoor (USA, ASPN), Isaac Desheng Liu (Singapore, AsPNA), Dusan Kostic (Brazil, ALANEPE), Abdullahi Mudi (Nigeria, AFPNA), Yusuke Okuda (Japan, JSPN), Siah Kim (Australia, ANZPNA )and Adrian Lungu (IPNA liaison).
All members of this committee collaborate with other IPNA committees, with the main purpose is to help and improve communication between juniors all around the world.
We are organizing a juniors database, trying to engage at least one member from each country from all regional societies and, during the next months, we will launch a Webinar program especially dedicated to juniors.
Please visit our IPNA website, we will advertise our most important activities and all regional societies events/courses/webinars.
Follow IPNA on Twitter, here we will share our most recent news and events and will survey your opinion for our future moves and tasks.
Ana Teixeira
Juniors Committee Chair
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IPNA Guidelines Workshop: 3 Days in a Nutshell
The preparation for this workshop started back in 2018 when it was first discussed at the IPNA Council Meeting in San Diego. Preparations for the physical meeting in Taipei, during the ACPN Congress, were in the full swing when the Covid-19 started and affected the further organization.
The IPNA Guidelines Workshop, so far, the biggest online event organized by IPNA, took place two weeks ago on March 29-31. The intensive program was divided into three days considering the different time zones. The workshop was dedicated to guideline methodology, distribution and implementation and a total of more than 20 new guidelines were presented by international experts.
Prof. Dieter Haffner, the Guidelines Workshop Chair, reflects on when it all started: “The planning already started on October 24, 2018 at the IPNA council meeting/ ASN meeting in San Diego, where I first spoke with Prof. Lin and Prof. Yap about the possibility to combine the workshop with the ACPN2020 which was moved to 2021 for reasons we all know,” says Prof. Haffner. He adds that he felt relieved when it was finally decided to hold the workshop fully virtual. “We had frequent discussions about that, but the situation worldwide was still unstable so that was the best decision,” he says.
The scientific program was developed by Prof. Haffner and the Best Practices and Guidelines Committee, chaired by Olivia Boyer and Pankaj Hari: 9 hours of the broadcasting, 46 speakers, 356 registrations and around 160 participants constantly joined. Thanks to the sponsors, Kyowa Kirin, Advicienne and Amgen, the registrations were free for everyone and the recordings will be available shortly with free-access on the IPNA website.
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New Grand Rounds in Pediatric Nephrology Program
The ISN – in partnership with the International Pediatric Nephrology Association (IPNA) – is developing a case-based online teaching program in pediatric nephrology, “Grand Rounds in Pediatric Nephrology,” to support the training needs of active Sister Renal Centers (SRC) pairs and other centers in LMICs.
Four Grand Round sessions will be broadcast throughout 2021. Additional editions may be scheduled to meet growing need.
The content will be determined by the emerging centers according to their training needs and will include discussion and didactic elements from senior experts. Fellows from ISN and IPNA SRCs will present cases, and trainees from pediatric nephrology centers in all LMICs will be invited to join.
The first such Grand Round session, “Management of Renal Bone Disease,” will be presented by Ruskshana Shroff from Great Ormond Street Hospital, London, UK, and Sukanya Govindan, Mehta Multispeciality Hospitals, Chennai, India, from the SRC India-UK5 partnership, on Friday, April 30 at 3 p.m. CEST.
This initiative was developed in response to restrictions imposed by the COVID-19 pandemic, which have significantly impacted activities within the 17 ISN SRC pairs focused on pediatric nephrology.
Recordings will be open access and available on the ISN Academy.
Fiona Mackie, IPNA Sister Centers Program Chair
John Mahan, Professional Education Committee Chair
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IPNA Registry: 2021 Update
In 2020 we finalized the administrative and legal process associated with the relocation of the Registry Central Office from Amsterdam to Heidelberg. The IPNA Registry Office is now based at Heidelberg University Hospital. The Executive Committee of the Registry is composed of registry coordinator (myself) and the IPNA Registry Co-Chairs Dr. Franz Schaefer and Dr Bradley Warady. We are assisted by Mrs Vera Cornelius, who is in charge of all administrative issues. The team can be reached at contact@ipna-registry.org.
Due to the relocation of the office and the European General Data Protection Regulation enforced in May 2018, new Data Transfer Agreements (DTAs) were sent to all national registries contributing with data. As for the end of February 2021 there are 17 Asian, 1 African and 2 South American centres with the DTA-s signed by the country representative. For the remainder of the countries from the above mentioned regions DTAs are still pending. Data from European Countries (n=40) will be shared by the ESPN Registry upon a written agreement, while the negotiations with USRDS (United States Renal Data System) and ANZDATA (Australia and New Zealand Dialysis and Transplant Association) are still ongoing.
In 2021 we initiated a organizing video-conferences with the collaborators in the individual regions to reactivate old and initiate new sites. So far representatives of 8 countries (Pakistan, Bangla Desh, Malaysia, Thailand, Indonesia, Bhutan, Laos, Vietnam) took part in online meetings. Meetings are planned to be held on regular basis.
Dagmara Borzych-Dużałka & Franz Schaefer
IPNA Registry
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The AAP, ASPN & NKF Patient Education Collaborative
The AAP, ASPN & NKF Patient Education Collaborative (PEC) was created to develop written materials regarding pediatric nephrology-related topics for parents of children with kidney disease and affected patients. The collaborative effort maximizes the strength of the three organizations, while also minimizing duplicative work and conflicting information.
Each patient article is created by two pediatric nephrologists and then reviewed by the three members of the steering committee comprised of three pediatric nephrologists, 1-2 non-physician pediatric nephrology ancillary providers, NKF staff, and 1-2 parents of children with kidney disease. The AAP HealthyChildren.org and NKF staff perform final editing for readability. Many of the articles are translated by the AAP into Spanish. Some articles have been viewed between 31,000 and 59,000 times in the last year in English on the HealthyChildren.org website, with even more views of the Spanish articles! Each article can be downloaded by providers and shared as a handout with parents.
The articles are available for your patients at the AAP HealthyChildren.org website and the NKF website.
Larry Greenbaum, MD, PhD, FAAP
lgreen6@emory.edu
Doug Silverstein, MD, FAAP
dsilverstein2001@yahoo.com
Bradley Warady, MD, FAAP
bwarady@cmh.edu
PEC Steering Committee
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Become an IPNA contributor!
Do you have any interesting news in the field of Pediatric Nephrology? Have you participated in an IPNA Teaching Course, are you doing the fellowship programme or have you recently visited an interesting workshop or congress? Contact Lucie from the IPNA Office at office@theipna.org
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IPNA Administrative Office
E-mail: office@theipna.org
Address: C-IN, 5.kvetna 65, Prague Congress Centre, 140 21, Prague 4, Czech Republic
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