CompCure Study & Registry
New complement inhibitors are currently under development, representing a breakthrough for the management and outcome of IC-MPGN and C3G.
Obtaining data from patients with this rare disease group is crucial to learn more about the natural history of the disease, stratifying patients for optimal treatment, and facilitating patient access to ongoing clinical trials.
Current Number of Patients enrolled in the CompCure Registry and Cohort Study
All CompCure centers
Pediatric
137
Adult
101
Total
0
To increase awareness of CompCure and the registry we are building, Giulia Bassanese prepared a poster for the ESPN conference, which took place in Vilnius in September 2023. If you are interested in learning more about the CompCure registry, and how to enroll, please contact Joanna.sladowska: Joanna.sladowska@med.uni-heidelberg.de
or Giulia giulia.bassanese@med.uni-heidelberg.de.
CompCure Participants Hospitals
EUROPE:
AUSTRIA
Vienna - Unit: Pediatric
Institution: Vienna Department of Pediatrics; Vienna General Hospital
Center: Center for Pediatric Dialysis and Kidney Transplantation/Complement-related Disorders
Expert: Prof. Klaus Arbeiter
Contact: Prof. Klaus Arbeiter
E-mail: klaus.arbeiter@meduniwien.ac.at
Telephone: +43 (0)1 40400-32320
Homepage: https://www.meduniwien.ac.at/web/en/health-clinics/departments-of-the-medical-university-of-vienna/
Vienna - Unit: Adult
Institution: Vienna Department of Pediatrics; Vienna General Hospital
Center: Clinical Department of Nephrology and Dialysis
Expert: Prof. Christoph Aigner
Contact: Prof. Christoph Aigner
E-mail: christof.aigner@meduniwien.ac.at
Homepage: https://www.meduniwien.ac.at/web/en/health-clinics/departments-of-the-medical-university-of-vienna/
BELGIUM
Leuven – Unit: PediatricInstitution: Leuven, Leuven University Hospitals
Center: Department of Pediatric Nephrology
Expert: Dr. Brigitte Adams
Contact: Dr. Brigitte Adams
E-mail: brigitte.adams@uzleuven.be
Telephone: (+32)16343822
Fax: (+32)16343842
Homepage: https://www.uzleuven.be/nl/kindergeneeskunde/nefrologie-en-orgaantransplantatie
Leuven – Unit: Adult
Institution: Leuven, Leuven University Hospitals
Center: Department of Nephrology
Expert: Prof. Katheleen Claes
Contact: Prof. Katheleen Claes
E-mail: kathleen.claes@uzleuven.be
Telephone: +32(0)16344580
Fax: +32(0)16344599
Homepage: https://www.uzleuven.be/nl/nefrologie
CZECH REPUBLIC
Prague - Unit: Pediatric
Institution: Prague University Hospital Motol
Center: Department of Pediatrics
Expert: Dr. Jakub Zieg
Contact: Naděžda Šimánková
Emial: nadezda.simankova@fnmotol.cz
Telephone: +42 0224432251
Fax: +42 0224432020
Homepage: https://www.fnmotol.cz/kliniky-a-oddeleni/cast-pro-deti/pediatricka-klinika-uk-2-lf-a-fn-motol/lekari/pracovni-skupiny/nefrologie-a-dialyza/
Prague - Unit: Adult
Institution: Prague Institute for Clinical and Experimental Medicine IKEM Prague
Center: Department of Nephrology
Expert: Prof. Ondrej Viklicky
Contact: Prof. Ondrej Viklicky
E-mail: ondrej.viklicky@ikem.czT
Telephone: +420261364110
Homepage: https://www.ikem.cz/cs/
FRANCE
Lyon – Unit: Pediatric
Institution: Lyon Hôpital Femme Mère Enfant & Université de Lyon
Center: Unit of Pediatric Nephrology, Rheumatology and Dermatology. French Reference Center for Rare Renal Diseases. French Reference Center for Rare Diseases of Calcium and Phosphate Metabolism.
Expert: Dr. Anne-Laure Sellier-Leclerc
Contact: Dr. Anne-Laure Sellier-Leclerc
E-Mail: anne-laure.sellier-leclerc@chu-lyon.fr
Telephone: +33427856130
Fax: +33427856768
Homepage: n/a
Paris – Unit: Pediatric
Institution: Paris Necker-Enfants Malades University Hospital
Center: Pediatric Nephrology Unit, Reference Centers for Inherited Renal Diseases and for Nephrotic Syndrome
Expert: Prof. Olivia Gillion-Boyer
Contact: Prof. Olivia Gillion-Boyer
E-mail: olivia.boyer@aphp.fr
Telephone: n/a
Homepage: https://maladiesrares-necker.aphp.fr/marhea/
Paris - Unit: Adult
Institution: Paris Necker-Enfants Malades University Hospital
Center: Nephrology Unit, Reference Centers for Inherited Renal Diseases and for Nephrotic Syndrome
Expert: Prof. Aude Servais
Contact: Prof. Aude Servais
E-mail: aude.servais@aphp.fr
Telephone: +33144494462
Fax: +33144494460
Homepage: https://maladiesrares-necker.aphp.fr/marhea/
Bordeaux – Unit: Pediatric
Institution: Bordeaux University Hospital
Center: Children’s Hospital - Pediatric Nephrology
Expert: Dr. Jerome Harambat
Contact: Dr. Jerome Harambat
E-mail: jerome.harambat@chu-bordeaux.fr
Telephone: n/a
Homepage: n/a
GERMANY
Essen – Unit: Pediatric
Institution: Essen University Children's Hospital
Center: Center of Rare Kidney Diseases, EZSE, University Hospital Essen
Expert: Dr. Lars Pape
Contact: Charlotte Decker (administrative coordinator)
E-mail: charlotte.decker@uk-essen.de
Telephone: +49-201-723-2310
Fax: +49-201-723-6871
Homepage: https://kinderklinik2.uk-essen.de/nephrologie/
Heidelberg – Unit: Pediatric
Institution: Heidelberg University Hospital
Center: Center for Rare Kidney Diseases at Center for Pediatrics and Adolescent Medicine
Expert: Prof. Franz Schaefer
Contact: Felicitas Michaelis (administrative coordinator)
E-mail: felicitas.michaelis@med.uni-heidelberg.de
Telephone: +49-6221-56 4110
Fax: +49-6221-56 5166
Homepage: https://www.heidelberg-university-hospital.com/diseases-treatments/childhood-diseases/kidney-diseases-in-childhood/
Hannover - Unit: Pediatric
c für Pediatric Nephrology, Hepatology and Metabolic Diseases, Center for Pediatrics and Adolescent Medicine
Expert: Dr. Nele Kanzelmeyer
Contact: Katrin Jaekel
E-mail: jaekel.katrin@mh-hannover.de
Telephone: +49-511-5327848
Fax: +49-511-5304830
Homepage: https://mhh-kinderklinik.de/
Tübingen – Unit: Pediatric
Institution: University Hospital Tubingen
Center: Department of Pediatric Nephrology
Expert: Dr. Kathrin Buder
Contact: Dr. Kathrin Buder
E-mail: kathrin.buder@ui-tuebingen.de
Telephone: n/a
Homepage: https://www.medizin.uni-tuebingen.de/de/das-klinikum/einrichtungen/kliniken/kinderklinik/nephrologie
ITALY
Bergamo – Unit: Adult
Institution: Bergamo Azienda Ospedaliera Papa Giovanni XXIII
Center: Nephrology Division
Expert: Prof. Piero Ruggenenti
Contact: Prof. Piero Ruggenenti,
E-mail: pruggenenti@asst-pg23.it
Telephone: +39 035 267 3817
Homepage: https://www.asst-pg23.it/reparti/nefrologia
Bologna – Unit: Pediatric
Institution: Bologna, Policlinico di Sant'Orsola
Center: Pediatric Nephrology
Expert: Dr. Andrea Pasini
Contact: Dr. Andrea Pasini
E-mail: andrea.pasini@aosp.bo.it
Telephone: +39 051 2143647
Homepage: https://www.aosp.bo.it/it/content/ambulatorio-di-nefrologia-e-dialisi-pediatrica
Brescia – Unit: Adult
Institution: Brescia ASST Spedali Civili Brescia
Center: Nephrology, Dialysis and Transplantation Unit
Expert: Dr. Federico Alberici
Contact: Dr. Federico Alberici
E-mail: n/a
Telephone: +39 03039951
Homepage: https://www.asst-spedalicivili.it/servizi/notizie/notizie_homepage.aspx
Florence – Unit: Pediatric
Institution: Florence Meyer Children’s Hospital IRCCS
Center: Nephrology and Dialysis unit
Experts: Prof. Paola Romagnani
Contact :Dr. Francesca Becherucci
E-mail: Francesca.becherucci@mayer.it
Telephone: +39 0555662562
Fax: +39 0555662400
Homepage: https://www.meyer.it/
Genoa - Unit: Pediatric
Institution: Genoa Istituto Giannina Gaslini
Center: U.O.D. Nefrologia, Dialisi e Trapianto
Expert: Dr. Francesca Lugani
Contact: Dr. Francesca Lugani
E-mail: francescalugani@gaslini.org
Telephone: +3901056363965
Homepage: https://www.gaslini.org/reparti/nefrologia-e-trapianto-reni/
Naples – Unit: Adult
Institution: University of campania ‘Luigi Vanvitelli’
Center: Nephrology Division
Expert: Dr. Rita Santarsiere
Contact: Dr. Rita Santarsiere
E-mail: ritasantarsiere@gmail.com
Telephone: +39 0815666652
Fax: +39 0815666652
Homepage: https://www.policliniconapoli.it/home
Padua – Unit: Pediatric
Institution: Padua Azienda Ospedaliera di Padova
Center: UOC Nefrologia Dialisi e Trapianto
Expert: Prof. Enrico Vidal
Contact: Prof. Enrico Vidal
E-mail: enrico.vidal@aopd.veneto.it
Telephone: +39-049-8213596
Fax: +39-049-8211401
Homepage: https://www.aopd.veneto.it/Nefrologia-Pediatrica
Rome - Unit: Pediatric
Institution: Rome Bambino Gesù Children's Hospital
Center: Division of Nephrology
Expert: Prof. Marina Vivarelli
Contact: Stefania Trabucchi
E-mail: stefania.trabucchi@opbg.net
Telephone: +39-06-6859-2393
Fax: +39-06-6859-2602
Homepage: https://www.ospedalebambinogesu.it/
Turin – Unit: Adult
Institution: Turin University of Torino-Ospedale HUB Torino Nord
Center: University of Torino-Ospedale HUB Torino Nord
Expert: Prof. Roberta Fenoglio
Contact: Prof. Roberta Fenoglio
E-mail: Roberta.fenoglio@unito.it
Telephone: +390112402051
Homepage: n/a
LATVIA
Riga
Dr. Sandra Derkevica
Children's Clinical University Hospital in Riga, Latvia
+37167064405 +37125736352 (mob.) sandra.derkevica@bkus.lv
MONTENEGRO
Dr. Danilo Radunovic
Adult Nephrology
danilo.radunovic2@gmail.com
MONTENEGRO
Podogorica – Unit: Pediatric
Institution: Clinical Center of Montenegro
Center: Department of Pediatric Nephrology
Expert: Dr. Danilo Radunović
Contact: Dr. Danilo Radunović
E-Mail: danilo.radunovic2@gmail.com
Telephone: n/a
Homepage: https://www.mojlab.me/poliklinika/usluge-poliklinike/nefrologija-podgorica
NETHERLANDS
Amsterdam – Unit: Pediatric
Institution: Amsterdam Academic University Medical Center (AUMC)
Center: Emma Children's Hospital
Experts: Prof. Elena Levtchenko
Dr. Antonia Bouts
Contact: Prof. Elena Levtchenko
E-mail: e.n.levtchenko@amsterdamumc.nl
Telephone: n/a
Homepage: n/a
Leiden – Unit: Adult
Institution: Leiden University Medical Center
Center: Center for expertise on Lupus-, Vasculitis- and Complement-mediated Systemic Autoimmune Diseases
Expert: Prof. Y.K. Onno Teng
Contact: Prof. Y.K. Onno Teng
E-mail: y.k.o.teng@lumc.ni
Telephone: n/a
Homepage: https://www.lumc.nl/over-het-lumc/partners/luvacs-shared-care/
Nijmegen – Unit: Pediatric
Institution: Nijmegen Radboud UMC
Center: Radboudumc Expertise Center for Rare Renal Disorders
Expert: Dr. Nicole van de Kar
Contact: Dr. Nicole van de Kar
E-mail: nicole.vandeKar@radboudumc.nl
Telephone: +31243614430
Fax: +31243616428
Homepage: https://www.radboudumc.nl/expertisecentra/expertisecentra-zeldzame-aandoeningen/zeldzame-nierziekten
Nijmegen – Unit: Adult
Institution: Nijmegen Radboud UMC
Center: Radboudumc Expertise Center for Rare Renal Disorders
Expert: Dr. Anne Eis van de Logt
Contact: Dr. Anne Eis van de Logt
E-mail: n/a
Telephone: +312463614761
Homepage: https://www.radboudumc.nl/expertisecentra/expertisecentra-zeldzame-aandoeningen/zeldzame-nierziekten
POLAND
Gdansk – Unit: Pediatric
Institution: Gdansk University Clinical Centre
Center: Department Pediatrics, Nephrology & Hypertension
Expert: Dr. Magdalena Drozynska-Duklas
Contact: Dr. Magdalena Drozynska-Duklas
E-mail: magdalena.drozynska-duklas@gumed.edu.pl
Telephone: +48 583 492 850
Fax: +48 583 492 852
Homepage: https://uck.pl/
Kraków
Institution Jagiellonian University Medical College
Center: Paediatric Nephrology and Hypertension Department at Jagiellonian University Medical
Expert Prof. Dorota Drozdz
Contact: Prf. Dorota Drozdz
E-mail: dorota.drozdz@uj.edu.pl
Telephone: +48 12 333 90 42
Homepage: Clinic of Paediatric Nefrology and Arterial Hypertension - Uniwersytet Jagielloński w Krakowie (uj.edu.pl)
Lublin
Institution: Medical University of Lublin
Center: Department of Pediatric Nephrology
Expert: Beata Bieniaś, MD, PhD
Contact: beata.bienias@umlub.pl
Homepage: Klinika Nefrologii Dziecięcej - Uniwersytecki Szpital Dziecięcy w Lublinie (uszd.lublin.pl)
Łódź
Institution: Polish Mother's Memorial Hospital Research Institute of Lodz
Center: Department of Pediatrics, Immunology and Nephrology
Expert: Małgorzata Stańczyk, MD, PhD
Contact: Małgorzata Stańczyk, MD, PhD
Phone:: +48783937788,
e-mail: mbstanczyk@gmail.com
Homepage: Klinik für Pädiatrie, Immunologie und Nephrologie - Polnisches Institut für Muttergesundheit (iczmp.edu.pl)
Wrocław
Institution: Wroclaw Medical University
Center: Clinic and Department of Paediatric Nephrology
Expert: Prof. dr hab. n. med. Katarzyna Kiliś-Pstrusińska
Contact: Prof. dr hab. n. med. Katarzyna Kiliś-Pstrusińska
Email: katarzyna.kilis-pstrusinska@umw.edu.pl
Phone: +48 717364400
Homepage: www.umw.edu.pl
PORTUGAL
Porto – Unit: Pediatric
Institution: Porto Centro Hospitalar Universitário do Porto
Center: Pediatric Nephrology Division
Expert: Prof. Alberto Caladas Afonso
Dr. Anna Texeira
Contact: Dr. Anna Texeira
E-mail: anafteixeira@gmail.com
Telephone: +351-222-077-500
Homepage: https://www.chporto.pt/
ROMANIA
Bucharest - Unit: Pediatric
Institution: Bucharest Fundeni Clinical Institute
Center: Pediatric Nephrology Division
Expert: Dr. Anca Marin
Contact: Dr. Anca Marin
E-mail: anca_marin_me@yahoo.com
Telephone: +40 21 275 0700
Homepage: https://icfundeni.ro/
SERBIA
Belgrade – Unit: Pediatric
Institution: University Children Hospital
Center: Department of Pediatric Nephrology
Expert: Dr. Dusan Paripovic
Dr. Gordana Miloševski-Lomić
Contact: Dr. Dusan Paripovic
E-Mail: dusanparipovic73@gmail.com
Telephone: n/a
Homepage: http://tirsova.rs/нефрологија/
SLOVENIA
Ljubljana – Unit: Pediatric
Institution: Ljubljana University Medical Centre
Center: Division of Pediatric, Department of Nephrology
Expert: Prof. Matjaž Kopač
Contact: Prof. Matjaž Kopač
E-mail: matjaz.kopac@kclj.si
Telephone: +386 15227145
Homepage: https://www.kclj.si/index.php?dir=/about_us
Ljubljana – Unit: Adult
Institution: Ljubljana University Medical Centre
Center: Adult Nephrology Unit
Expert: Prof. Damjan Kovač
Contact: Dr. Andrej Skoberne
E-mail: andrej.skoberne@gmx.net
Telephone: 00386 1 522 3110
Homepage: https://www.kclj.si/index.php?dir=/about_us
SPAIN
Barcelona – Unit:Pediatric
Institution: Barcelona Hospital Universitari Vall d'Hebron
Center: Barcelona Hospital Universitari Vall d' Hebron, Service of Pediadric Nephrology
Expert: Prof. Gema Ariceta
Contact: Prof. Gema Ariceta
E-mail: gema.ariceta@vallhebron.cat
Telephone: +34 93 489 30 82
Homepage: https://hospital.vallhebron.com/en/healthcare/departments/paediatric-nephrology
Barcelona – Unit: Adult
Institution: Hospital Clinic de Barcelona
Center: Nephrology Department
Expert: Prof. Luis Quintana
Contact: Prof. Luis Quintana
E-mail: dqualitat@clinic.cat
Telephone: +34932279346
Homepage: https://www.clinicbarcelona.org/
Madrid – Unit Pediatric
Institution: Madrid Hospital Universitario 12 de Octubre
Center: Pediatric Nephrology Division
Experts: Prof. Mar Espino Hernandez
Prof. Enrique Morales
Contact: Prof. Enrique Morales
E- mail: emoralesr@senefro.org
Telephone: n/a
Homepage: https://www.comunidad.madrid/hospital/12octubre/profesionales-hospital-materno-infantil/hospital-infantil/nefrologia-infantil
Madrid- Unit Adult
Institution: Madrid Hospital Universitario 12 de Octubre
Center: Nephrology Department
Expert: Prof. Enrique Morales
Contact: Prof. Enrique Morales
E- mail: emoralesr@senefro.org
Telephone: n/a
Homepage: https://www.comunidad.madrid/hospital/12octubre/profesionales-hospital-materno-infantil/hospital-infantil/nefrologia-infantil
TURKEY
Adana – Unit: Pediatric
Institution: Cukurova Univeristy, Faculty of Medicine/Balcali Hospital
Center: Department of Pediatric Nephrology
Expert: Dr. Aysun Karabay Bayazit
Contact: Dr. Aysun Karabay Bayazit
E-mail: batmis@cu@edu@tr
Telephone: +905322551061
Homepage: https://www.cu.edu.tr/
Ankara - Unit: Pediatric
Institution: Hacettepe University Faculty of Medicine
Center: Division of Pediatric Nephrology Ihsan Dogramaci Children’s Hospital
Expert: Prof Ali Duzova
Contact: Prof Ali Duzova
E-mail: aduzova@hacettepe.edu.tr
Telephone: n/a
Homepage: http://www.hastane.hacettepe.edu.tr/nefroloji_1006.html
Istanbul – Unit: Pediatric
Institution: Istanbul University Cerrahpasa, Cerrahpaşa Medical School
Center: Pediatric Nephrology
Expert: Prof. Nur Canpolat
Contact: Prof. Nur Canpolat
E-mail: n/a
Telephone: n/a
Homepage: n/a
Istanbul – Unit: Pediatric
Institution: University Istanbul Faculty of Medicine
Center: Pediatric Nephrology
Expert: Prof. Alev Yilmaz
Contact: Prof. Alev Yilmaz
E-mail: alev.yilmaz@istanbul.edu.tr
Telephone: n/a
Homepage: http://www.istanbul.edu.tr/en/
Izmir – Unit:Pediatric
Institution: Ege University
Center: Department of Pediatric Nephrology
Expert: Dr. Ipek Kaplan Bulut
Contact: Dr. Ipek Kaplan Bulut
E-mail: n/a
Telephone: n/a
Homepage: https://med.ege.edu.tr/eng-2974/department_of_child_nephrology.html
WORLD:
ISRAEL
Haifa – Unit Pediatric
Institution: Rambam Health Care Campus
Center: Pediatric Nephrology
Expert: Dr. Shirley Pollack
Contact: Dr. Shirley Pollack
E-Mail: s_pollack@rambam.health.gov.il ´
Telephone: n/a
Homepage: https://www.rambamhcc.com/post/pediatric-nephrology-patients-leave-the-nest
SOUTH- KOREA
Seoul – Unit: Pediatric
Institution: Seoul National University College of Medicine – Children’s Hospital
Center: Department of Pediatric Nephrology
Expert: Prof. Hee Gyung Kang
Contact: Prof. Hee Gyung Kang
E- mail: kanghg@snu.ac.kr
pedneph@snh.org
Telephone: +82-2-2072-0658
Fax: +82-2-743-3455
Homepage: n/a