aHUS Research Update: Dec 2020

Article No. 404

16 December 2020


‘Your World in Research’

December 2020 Additions to Our aHUS Research Scrolls

Since 2020 or ‘the Year of COVID-19’ has been challenging on many fronts, it seems fitting to ring out this year featuring a new publication by Bernabeu et al (Nov 2020). Its title is a great preview of the contents, Atypical Hemolytic Uremic Syndrome: New Challenges in the Complement Blockage Era, but additionally it underscores key topics for aHUS diagnosis and treatment. Among the citations listed in the Bernabeu paper one referenced, #73 Raina et al, 2019, has a section written by the aHUS Alliance Global Action team headed ‘Eculizumab Challenges: Patients’ Perspective’.
Here’s a small selection of new aHUS research from various topics of high interest released since aHUS Awareness Day (24 Sept 2020). Underlying themes in many underscore continued difficulty with diagnosis, treatment considerations and disease management, and a lack of drug access in many nations. We invite you to view many more publications newly added to our Research & Publications scrolls, which are categorized by topic. The ‘New Research’ scroll heads the page, created so that readers can easily access many of the main aHUS publications which have been released over this past year. Those interested into a ‘deep dive’ into a specific interest area will find multiple years of aHUS research on scrolls for these topics:  Critical Care, Thrombotic Microangiopathy (TMA), Extra Renal: Effects on the Body, Pregnancy, Transplants, Genetics, Research in Specific Nations, Case Studies, Complement, Patient Registry: Publications, Drug discovery/Research, Summary articles/Literature Reviews, Consensus Documents/Guidelines, Secondary aHUS, Triggers, Treatment, Diagnosis, and Varied Topics (other).
Hundreds of aHUS-specific publications are listed on our Research & Publications scrolls, but do alert the aHUS Alliance Global Action team if our volunteers have missed a research paper. Articles on various publications and scroll topics exist, featuring original content written by an international team of aHUS patients and family caregivers, with many  key website articles listed on our website’s aHUS Resource Page.
While many are aware that atypical HUS is an ultra rare disease, did you know that aHUS is considered a complement-mediated TMA? Research relevant to aHUS can be found under the headings of rare diseases, TMA, complement, and more – and the variety of terminology can make finding information difficult. Here’s a small sample of aHUS research that’s been released in the last two months of 2020. We invite our readers to explore our  Research & Publications page, and to visit our Atypical HUS Resource Page to learn more about how those topics affect aHUS patients and guide their clinical care.
Knotek et al Combined liver-kidney transplantation for rare diseases
Özçakar et al Transplantation in pediatric aHUS within the era of eculizumab therapy
Ranawaka et al Combined liver and kidney transplantation in children and long-term outcome
Fakhouri et al  Management of thrombotic microangiopathy in pregnancy and postpartum: report from an international working group
Janga etal Preeclampsia, HELLP Syndrome, and Postpartum Renal Failure with Thin Basement Membrane Nephropathy: Case Report and a Brief Review of Postpartum Renal Failure
Naqvi  Hemolytic Uremic syndrome associated with pregnancy: Outcome from acute Kidney Injury
Treatment & Diagnosis
Ariceta et al The long-acting C5 inhibitor, ravulizumab, is effective and safe in pediatric patients with atypical hemolytic uremic syndrome naïve to complement inhibitor treatment
Palma et al Complement in Secondary Thrombotic Microangiopathy
Acosta-Medina et al Determination of Relapse Risk By Complement Gene Variants after Eculizumab Discontinuation in Complement-Mediated Thrombotic Microangiopathy: A Retrospective Review
Dhaliwal et al Outcomes of a Clinician-Directed Protocol for Discontinuation of Complement Inhibition Therapy in Atypical Hemolytic Uremic Syndrome
Fakhouri et al. Eculizumab discontinuation in children and adults with atypical haemolytic uremic syndrome: a prospective multicentric study

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