aHUS and TMA Study Centers
An International List Compiled by the aHUS Alliance
Atypical HUS is difficult to diagnosis and treat, and people initially seen at a physician’s office or hospital may be referred to a nephrologist, hematologist, immunologist or other specialist when the rare disease aHUS is suspected (atypical hemolytic uremic syndrome). There is no current standard definition of what constitutes an “aHUS expert center”, but there are websites and physician groups whose online presence notes an identifiable, specific interest in multiple clinical and research areas that include aHUS.
Thrombotic microangiopathy (TMA), rare renal disease, complement-mediated conditions and other phrases may be used as key search terms to find clinical and research teams familiar with atypical HUS genetics, diagnosis, and treatment.
Note: Begun in 2018 this aHUS Alliance curated list will continue its development, so please contact the aHUS Alliance with comments or questions. E: info@aHUSallianceAction.org
Brazilian aHUS & TMA Study Group (Grupo de estudos brasileiro de SHUa & MAT) Website of this group of clinicians and researchers contains information, research, and team updates regarding aHUS and TMA. Síndrome Hemolítica Urêmica atípica (SHUa) é uma microangiopatia trombótica (MAT).
Visit their website: www.ahusbrazil.com
An established research program at The Hospital for Sick Children (SickKids) to understand the pathomechanism of complement-mediated kidney diseases (e.g. aHUS and MPGN/C3G), this research has translational aspects and involves clinical and basic research. With ongoing studies related to DGKE-associated atypical HUS, SickKids offers specialized services and clinical care related to this diagnosis and its management.
Visit the webpage at the University of Toronto: Laboratory Medicine and Pathobiology https://bit.ly/2GMErBd
EU – European Union
As part of the European Rare Kidney Disease Reference Network , these nations comprise the group of ERKNet Reference Centers specializing in thrombotic microangiopathy (typical HUS, atypical HUS, thrombotic thrombocytopenic purpura). Each hospital, clinic, or university in the network is listed as an adult or pediatric unit with links that lead to detailed information for each location.
Visit the ERKNet Reference Center website to gain info for each nation, with links to each location: www.erknet.org
Pediatric Nephrology Division, part of Kidney Institute, Medanta caters to all referrals of children and adults diagnosed with complement abnormalities: atypical hemolytic uremic syndrome, C3 glomerulonephritis and dense deposit disease. Detailed diagnostics and treatment is available at the center.
Centro SEU, Center for HUS Control (Centro per la Cura e lo Studio della Sindrome Emolitico Uremica) The SEU Center provides treatment while also promoting knowledge and exploration of innovative therapies and clinical approaches. The Center offers synergistic coordination within these fields: Pediatrics, Nephrology, Intensive Therapy, Imaging, Molecular Biology, Microbiology, Genetics, Chemical-Clinical Analysis, Pediatric Surgery, Transfusion Center, Infantile Neuropsychiatry and Obstetrics.
Visit their website: www.centroseu.org
With three locations (Milan, Bergamo and Ranica) the Mario Negri Institute in 2013 was designated by the Italian government as an IRCCS (Istituto di Ricovero e Cura a Carattere Scientifico), a hospital and/or institution demonstrating excellence in the organization and management of health services as well as in the development and implementation of biomedical research. The Bergamo campus is the site for the International Registry of Recurrent and Familial Hemolytic Uremic Syndrome (HUS) and Thrombotic Thrombocytopenic Purpura (TTP).
CUREiHUS A nationwide prospective study, started in 2016 and abbreviated as CUREiHUS (NTR5988), began in the Netherlands under the acronym CUREiHUS which was derived from the words “Curious” and “Cure”. At Radboudumc a team of doctors and researchers are conducting an observational, cohort study designed to explore new treatment guidelines and that includes creating a database of clinical symptoms, biochemical parameters, and genetic data.
Visit their website: www.cureihus.nl
aHÜS Kayıt Sistemi Located in Turkey, this effort centers on an aHUS patient registry and clinical network to gain knowledge of the clinical effects of mutations in complement regulatory genes with goals to to help improve guidelines for treatment and patient health status. This system will record the frequency of genetic abnormalities in individuals diagnosed with ahus in Turkey and note disease characteristics, treatment, and identification and comparison of clinical outcomes.
Visit their website: http://www.ahusnet.org
UK – United Kingdom
Opened in 2016, the National Renal Complement Therapeutics Centre specializes the diagnosis and management of atypical haemolytic uraemic syndrome and C3 glomerulopathy. Their clinical, diagnostic and research staff based within Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University.
Visit their website: www.atypicalhus.co.uk
UCLH provides an integrated specialist service whose team of medical professionals have developed patient pathways to maximise response to therapies and who focus on the diagnosis, treatment and follow up of patients with Thrombotic Thrombocytopenia Purpura (TTP), Atypical Haemolytic Uraemic Syndrome (aHUS) and Thrombotic Microangiopathies (TMAs).
Visit their website: https://bit.ly/2H0QL02
Part of the Boston University Clinical and Translational Science Institute (CTSI), the BUTMAC team has a multidisciplinary approach to the diagnosis of thrombotic microangiopathies (TMAs) which are designed to improve patient outcomes with accurate diagnosis to indicate appropriate therapies and disease management. The TMA team works to advance basic and clinical research related to TMA, such as engagement in clinical trials of newer agents for the treatment of complement mediated HUS as a special form of TMA.
Visit their website at: https://bit.ly/2ETnqzJ
The Rare Kidney Diseases Clinic and the Molecular Otolaryngology and Renal Research Laboratories (MORL) work together to provide state-of-the-art testing and interpretation for children and adults diagnosed with rare genetic and complement-mediated kidney diseases including atypical hemolytic uremic syndrome (aHUS), dense deposit disease (DDD), C3 glomerulonephritis (C3GN), and immune complex glomerulonephritis. This combined multidisciplinary method of care allows specialists in human genetics, complementopathies and rare kidney diseases to provide to patients the most up-to-date tests and care for personalized treatment and management.
Launched in 2014 as an effort to organize research efforts in the thrombotic microangiopathies, the USTMA now incorporates 15 large US referral centers.
Visit their website: www.ustmaconsortium.com
Text provided here for these clinical and research groups was selected from content on their individual webpages.
Centers of Excellence: Click HERE to read a brief
Rare Disease UK article on this topic.
See also: the aHUS Alliance network of aHUS Clinicians and Investigators
Building a Better Future through Research and Collaboration
Providing informational resources about the rare disease atypical hemolytic uremic syndrome, the aHUS Alliance does not endorse groups or provide medical information.