aHUS Trials Watch 4

Some news about trials affecting those with aHUS; but at two ends of the clinical research spectrum.
The first is about recruitment taking place in number of Eastern European Countries, including Estonia (2 sites) Georgia,  Latvia, Lithuania(2), Macedonia (The former Yugoslav Republic of) and Serbia to the trial  ( NCT03303313) of the use of the newly developed complement inhibitor ,Cemdisiran, to treat aHUS.
Anyone who is eligible in those countries and treated for aHUS at those sites  may be recruited to the trial, both doctors and patients can contact the trial director to find out more. Contact details can be found here. 
Secondly as previously reported the aHUS Registry NCT01522183, (click here ) has been overhauled and over 200 sites and 1000 patients have been discontinued from active participation in the Registry. The remaining 86 sites, some of which because of specific regulations are still recruiting, are now listed and can be seen below.
aHUS patients, treated at the sites listed, can ask their doctors what their Registry enrollment status is . Those enrolled and active can provide useful data about themselves, on a six monthly basis , about their health and well being  and contribute to understanding about the disease and its treatments for the benefit of others.

United States, District of Columbia
Georgetown University Hospital Active, not recruiting
Washington, District of Columbia, United States, 20007
United States, Georgia
Emory Children’s Center Emory University Active, not recruiting
Atlanta, Georgia, United States, 30322
United States, Massachusetts
Brigham and Women’s Hospital Active, not recruiting
Boston, Massachusetts, United States, 02115
United States, Missouri
Washington University School of Medicine Active, not recruiting
Saint Louis, Missouri, United States, 63110
United States, North Carolina
Syneos Health Recruiting
Wilmington, North Carolina, United States, 28403
Brookview Hills Research Associates LLC Active, not recruiting
Winston-Salem, North Carolina, United States, 27103
United States, Ohio
Arthur James Cancer Hospital Active, not recruiting
Columbus, Ohio, United States, 43210
Hopital Erasme Recruiting
Brussels, Belgium
Contact: Massart
Hopital Universitaire des Enfants Reine Recruiting
Brussels, Belgium
Contact: Adams
UZ Brussels Recruiting
Brussels, Belgium
Contact: Pipeleers
UZA (Adult) Recruiting
Edegem, Belgium
Contact: Bosmans
UZA (Pediatric) Recruiting
Edegem, Belgium
Contact: Van Hoeck
UZ Gent (pediatric) Recruiting
Gent, Belgium
Contact: Vande Walle
University Hospital Leuven (Adult) Recruiting
Leuven, Belgium
Contact: Claes
University Hospital Leuven (pediatric) Recruiting
Leuven, Belgium
Contact: Levtchenko
CHU de Liege – Clinique de l’Esperance (pediatric) Recruiting
Liège, Belgium
Contact: Collard
CHU de Liege – Sart Tilman Recruiting
Liège, Belgium
Contact: Weekers
Cliniques Universitaires Saint-Luc (adult) Recruiting
Woluwe-Saint-Lambert, Belgium
Contact: Goffin
Cliniques Universitaires Saint-Luc (Pediatric) Recruiting
Woluwe-Saint-Lambert, Belgium
Contact: Godefroid
Canada, Ontario
London Health Science Center Active, not recruiting
London, Ontario, Canada
The Hospital for Sick Children Active, not recruiting
Toronto, Ontario, Canada
Canada, Quebec
CHU Ste Justine Active, not recruiting
Montréal, Quebec, Canada
CHU de Quebec Hotel-Dieu de Quebec Active, not recruiting
Québec, Quebec, Canada
CH Amiens – Hopital Nord Recruiting
Amiens, France
Contact: Djeddi
Hopital Sud Recruiting
Amiens, France
Contact: Choukroun
CHU Angers Recruiting
Angers, France
Contact: Subra
CHG Bayonne Recruiting
Bayonne, France
Contact: Lacraz
CHU de Bordeaux Pellegrin Recruiting
Bordeaux, France
Contact: Delmas
CHRU Brest Recruiting
Brest, France
Contact: LeMeur
Hopital Femme Mere Enfant Recruiting
Bron, France
Contact: Sellier-LeClerc
CHRU de Caen Hopital Clemenceau Service de Nephrologie Recruiting
Caen, France
Contact: Chatalet-Pouliquen
Centre Hospitialier Regional de Chambery Recruiting
Chambéry, France
Contact: Bally
CHU Clermont Ferrand Recruiting
Clermont-Ferrand, France
Contact: Heng
CHU Dijon Recruiting
Dijon, France
Contact: Mousson
CHU Grenoble Recruiting
Grenoble, France
Contact: Zaoui
Le Kremlin Bicetre Hospital Recruiting
Le Kremlin-Bicêtre, France
Contact: Durrbach
CHRU de Lille Hopital A Calmette Recruiting
Lille, France
Contact: Provot
CHRU de Lille Hopital Jeanne de Flandre Recruiting
Lille, France
Contact: Manucci-Lahoche
Hopital Edouard Herriot (CHU Lyon) Recruiting
Lyon, France
Contact: Jolivot
Hopital de la Timone Enfants Recruiting
Marseille, France
Contact: Rousset-Rouviere
CHU de Montpellier Recruiting
Montpellier, France
Contact: Fila
Hopital Brabois Recruiting
Nancy, France
Contact: Frimat
Hopital de Nancy Recruiting
Nancy, France
Contact: Vrillon
CHU de Nantes-Hopital Hotel Dieu Recruiting
Nantes, France
Contact: Fakhouri
Hopital Enfants et Adolescents Recruiting
Nantes, France
Contact: Roussey
Le Centre Hospitialier Universitarie de Nice Hopital Pasteur Recruiting
Nice, France
Contact: Seitz-Polski
HEGP – Hopital Europeen Georges Pompidou Recruiting
Paris, France
Contact: Thervet
Hopital Necker, Enfants Malades Service de Nephrologie Pediatrique Recruiting
Paris, France
Contact: Boyer
Hopital Necker Recruiting
Paris, France
Contact: Legendre
Hopital Robert Debre Service de Nephrologie Pediatrique Recruiting
Paris, France
Contact: Deschenes
Hopital Tenon Recruiting
Paris, France
Contact: Rondeau
CH Perpignan Recruiting
Perpignan, France
Contact: Vela
Hopital Poitiers Recruiting
Poitiers, France
Contact: Bridoux
CHU de Pontoise Recruiting
Pontoise, France
Contact: Devaud
CHU de Rennes Ponchaillou Recruiting
Rennes, France
Contact: Vigneau
CHU Rennes, Hopital Sud Recruiting
Rennes, France
Contact: Taque
CHU-CH Charles Nicolle Recruiting
Rouen, France
Contact: Louillet
Hopital de Bois Guillaume CHU de Rouen Recruiting
Rouen, France
Contact: Lebourg
Hopital Civil de Strasbourg Recruiting
Strasbourg, France
Contact: Hannedouche
Nouvel Hopital Civil Recruiting
Strasbourg, France
Contact: Moulin
CHU Rangueil Recruiting
Toulouse, France
Contact: Kamar
Hopital des Enfants Recruiting
Toulouse, France
Contact: Decramer
CHFU de Tours Recruiting
Tours, France
Contact: Halimi
CH Valenciennes Recruiting
Valenciennes, France
Contact: Haeck
Universitaetsklinikum Essen Active, not recruiting
Essen, Germany
Medizinische Hochschule Hannover Adult Nephrology Active, not recruiting
Hannover, Germany
Medizinische Hochschule Hannover Pediatric Nephrology Active, not recruiting
Hannover, Germany
Universitaet Heidelberg Active, not recruiting
Heidelberg, Germany
Universtaetskilinkum Schlkeswig-Holstein Active, not recruiting
Luebeck, Germany
Universitaetskilinikum Muenster Active, not recruiting
Münster, Germany
Universitaetsklinikum Tuebingen Active, not recruiting
Tübingen, Germany
Soroka University Medical Center Active, not recruiting
Be’er Sheva, Israel
Policlinico Consorziale de Bari Active, not recruiting
Bari, Italy
U O Nefrologia e Dialisi Pediatrica Ospedale Giovanni XXIII Active, not recruiting
Bari, Italy
Azienda Ospedaliero – Universitaria Careggi Active, not recruiting
Firenze, Italy
Istituto Giannina Gaslini Active, not recruiting
Genova, Italy
Fondazione IRCCS Ca Granda, Ospedale Maggiore Policlinico Active, not recruiting
Milano, Italy
Pad Croff Nefrologia Ospedale Maggiore Policlinico Active, not recruiting
Milano, Italy
S C Nefrologia – A O Ospedale Niguarda-Ca Granda Active, not recruiting
Milano, Italy
Dipartmento di Nefrologia e Urologia Ospedale Pediatrico Bambin Gesu Active, not recruiting
Roma, Italy
Ospedale Pediatrico Regina Margherita Active, not recruiting
Torino, Italy
NZOZ – TRI Medica Recruiting
Łódź, Poland
Contact: Jander
Samodzielny Publiczny Zaklad Opieki Zdrowotnej Centralny Szpital Klinkzny Recruiting
Łódź, Poland
Contact: Nowicki
United Kingdom
University College London Hospitals NHS Foundation Trust Active, not recruiting
London, United Kingdom
Royal Manchester Children’s Hospital Active, not recruiting
Manchester, United Kingdom
Newcastle Upon Tyne Hospitals NHS Foundation Trust Active, not recruiting
Newcastle, United Kingdom


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