aHUS and TMA Study Centers

 

 

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

 

 

 

 

Brazil

 

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

 

 

 

Canada

 

The Hospital for Sick Children:  SickKids Research Institute Cell Biology Program

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.

  • Belgium – 2 locations
  • Czech Republic – One location
  • Finland – One location
  • France – 3 locations
  • Germany – 6 locations
  • Italy – 8 locations
  • Lithuania – One location
  • Netherlands – 2 locations
  • United Kingdom – 4 locations

Visit the ERKNet Reference Center website to gain info for each nation, with links to each location:  www.erknet.org

 

 

 

India

 

Pediatric Nephrology Division: Medanta, The Medicity

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.

Visit their website: http://www.medanta.org/dr-sidharth-kumar-sethi/  and also  http://www.pediatricnephrologyindia.com/

 

 

 

Italy

 

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

 

 

Mario Negri Institute

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).

Visit their website for the Registry:  https://bit.ly/2EsLbhu      The Anna Maria Astori Center (pdf):  https://bit.ly/2JpeC7U

 

 

 

 

Netherlands

 

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

 

 

 

Turkey

 

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

 

The National Renal Complement Therapeutics Centre

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

 

 

University College London Hospitals NHS Foundation Trust (UCLH):  Blood Diseases

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

 

 

 

USA

 

BUTMAC:  Boston University

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

 

 

Rare Renal Disease:  University of Iowa

The Rare Renal Disease Clinic is a national and international clinical referral center for children and adults who have been diagnosed with:   atypical hemolytic uremic syndrome (aHUS),  C3 glomerulopathy (C3G) including dense deposit disease DDD,  sometimes called type 2 MPGN, C3 glomerulonephritis (C3GN), and membranoproliferative glomerulonephritis type 1 and 3 (MPGN 1 and 3).

Visit their website:   www.uihc.org/rare-kidney-diseases

 

 

United States Thrombotic Microangiopathy (USTMA) Consortium

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.