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
99
Adult
20
Total
99
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
BELGIUM
Leuven:
Pediatric Nephology Leuven
e-mail: brigitte.adams@uzleuven.be
CZECH REPUBLIC
Prague:
Jakub ZiegPediatrická klinika 2.LF a FN Motol
V Úvalu 84; 15006 Praha 5
email: jakub.zieg@fnmotol.cz
CROATIA
Zagreb:
Lovro Lamot, MD, PhDDivision of Pediatric Nephrology, Dyalisis and Transplantation,
Department of Paediatrics, University Hospital Center Zagreb
Kišpatićeva 12, 10000 Zagreb, Croatia
FRANCE
Lyon:
Dr Anne Laure Sellier Leclerc
Service de Néphrologie Rhumatologie Dermatologie Pédiatrique
Hospices Civils de Lyon
Hôpital Femme Mère Enfant
59 Boulevard Pinel
69677 Bron cedex
Centre de Référence des Maladies Rénales Rares Néphrogones, filière ORKID
Réseau Européen des Maladies Rénales Rares ERK-Net
Téléphone +33427856129
Secrétariat +33427856128
Fax : +33427856768
e-mail: anne-laure.sellier-leclerc@chu-lyon.fr
Paris:
Laetitia LECLERE
Hôpital Necker - Enfants Malades
Secrétariat de Néphrologie Pédiatrique
149 rue de Sèvres
75015 PARIS
Tél. 01 42 19 26 48
Fax 01 44 49 44 60
Patients can request a first appointment by visiting mon.aphp.fr
GERMANY
Heidelberg:
PhD MD Joanna Sladowska-Kozlowska
Heidelberg University Hospital
Im Neuenheimer Feld 430 | 69120 Heidelberg
E-Mail: joanna.sladowska@med.uni-heidelberg.de
Hannover:
Hannover Medical School Center
Department of Pediatric Nephrology,
Clinic for Pediatric Nephrology, Hepatology and Metabolic Diseases,
Center for Pediatrics and Adolescent Medicine
Clinical research coordinator:
Jaekel.kathrin@mh-hannover.de
ISRAEL
Petah Tikva:
Dr. Yael Borovitz, MD
Pediatric Nephrologist
Pediatric Nephrology Institute
Schneider Children's Medical Center
Petah Tikva, ISRAEL
Yaelbo2@clalit.org.il
ITALY
Padua:
Enrico Vidal
Pediatric Nephrology Unit
Azienda Ospedale Università Padova
Via Giustiniani, 2
35128 Padova - ITALY
Email: nefrologia.pediatrica@aopd.veneto.it
Bologna:
Dr. Andrea Pasini
andrea.pasini@aosp.bo.it
SSD of Pediatric Nephrology and Dialysis - IRCCS Azienda Ospedaliero-Universitaria di Bologna Tel.: +39.051.2144617 Tel./Fax.: +39.051.2144441
Rome:
Marina Vivarelli, MD
U.O.C. Trials
Tel: +39-06-68593081, 06-68597273
Laboratorio Nefrologia
Tel: +39-06-68594402
U.O. Nefrologia
Tel: +39-06-68592393
Ospedale Pediatrico Bambino Gesù
Piazza S. Onofrio 4
00165 Rome, Italy
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
Podgorica:
Dr. Danilo Radunovic
Clinical Center of Montenegro
(Klinicki Centar Crne Gore)
Ljubljanska bb
81 000 Podgorica
Montenegro
NETHERLANDS
Amsterdam:
Academic University Medical Center (AUMC)
Emma Children's Hospital
Clinical research coordinator:
s.huijgen@amc.uva.nl
Leiden:
Lotte Weel
LuVaCs Research Manager Lupus, Vasculitis and Complement-mediated Systemic disease Centre of Expertise
E: LuVaCs.projecten@lumc.nl | l.weel@lumc.nl
T: (+31) 6 42619158
Nephrology | Internal Medicine
Leiden University Medical Centre (LUMC) | Building 1, Room B2-137
Albinusdreef 1, Postbus 9600 | 2300 RC Leiden
Nijmegen::
Prof Dr Nicole CAJ van de Kar, MD,PhD
Pediatric Nephrologist
Department of Pediatric Nephrology
Radboudumc Amalia Children's Hospital
P.O.Box 9101, 6500 HB Nijmegen,
The Netherlands
Geert Grooteplein Zuid 10, 6525 GA Nijmegen, the Netherlands
POLAND
Gdańsk:
MD,PhD Magdalena Drożyńska-Duklas
Pediatric Nephrology Dept.
University Hospital of Gdansk
magdalena.drozynska-duklas@gumed.edu.pl
Łódź:
Małgorzata Stańczyk, MD, PhD
Department of Pediatrics, Immunology and Nephrology
Polish Mother's Memorial Hospital Research Institute of Lodz
e-mail: mbstanczyk@gmail.com
PORTUGAL
Porto:
Pediatric Nephrology Unit of Centro Materno-Infantil do Norte
Unidade Local de Saúde de Santo António
Largo da Maternidade Júlio Dinis 45
4050-651 Porto, Portugal
Dr. Anna Teixeira
Dr. Liane Costa
ROMANIA
Bucharest:
Dr. Anca MarinBuchrest,
Fundeni Clinical Institute, Pediatric Nephorlogy Division
e-mail: anca_marin_me@yahoo.com
SLOVENIA
Ljubljana:
Matjaž Kopač, M.D., D.Sc.
University Medical Centre Ljubljana
Division of Pediatrics, Department of Nephrology
Bohoričeva 20, 1000 Ljubljana
Slovenia, EU
SOUTH KOREA
Seoul:
강희경 姜熙京 Hee Gyung Kang
소아과학교실 Pediatrics / Professor
Division Chief, Pediatric Nephrology
Director, Kidney Disease Center for Children and Adolescents,
Seoul National University Children's Hospital
Seoul National University College of Medicine
101 Daehak-ro, Jongno-Gu, Seoul 03080, Korea
Tel +82-2-2072-0658
FAX +82-2-743-3455
Email kanghg@snu.ac.kr / pedneph@snuh.org
https://snucm.elsevierpure.com/en/persons/hee-gyung-kang
SPAIN
Barcelona:
Carla Soto Santoyo
Study Coordinator/Data Entry
Department of Pediatric Nephrology
Vall d'Hebron Research Institute (VHIR)T:
0034 93 489 30 82
Nefrología Pediátrica, Planta 2 Edificio Maternoinfantil Hospital
Vall D'HebronPasseig de la Vall d’Hebron, 119-129 | 08035 Barcelona
TURKEY
Izmir:
Assoc. Prof. İpek KAPLAN BULUT, MD
Ege University, Medical Faculty,
Department of Pediatrics
Division of Pediatric Nephrology
35100, İzmir - Türkiye
Adana:
Dr Bahriye Atmis
Cukurova University,
Department of Pediatric Nephrology
Adana
e-mail: batmis@cu.edu.tr