The European Paediatric Transplant Registry (PETER): the international registry of the European Reference Network on Transplantation in Children (ERN-TRANSPLANTCHILD)
Luz Yadira Bravo-Gallego1,2,3,6, Piotr Kalicinski4, Ryszard Grenda5, Ewa Danielewska4, Miguel Clemente Bernal6, María Alós Díez7,8, Lorena Fernández Tomé7,8, María José Quiles7,8, Laura Espinosa Román9, Marta Melgosa6,9, Diego Morante Martínez9, Alida Alcolea10, Esther Ramos-Boluda10, Luis García Guereta11, Olga de la Serna12, Lars Wennberg13, Mara Cananzi14, Jelena Rascon15, Antonia Bouts16, Conceiçao Mota17, Licia Peruzzi18, Yolanda Calzada19, Marta González-Vicent20, Jose Jonay Ojeda6, María Jesús Pascau2,6,21, Esteban Frauca6,7,8, Paloma Jara Vega6, Francisco Hernández-Oliveros6,22,23, on behalf of ERN-TransplantChild6.
1Clinical Immunology Department, La Paz University Hospital, Madrid, Spain; 2Research on comprehensive care for transplanted children and adolescents, La Paz Institute of Biomedical Research (IdiPAZ), Madrid, Spain; 3U767, Center for Biomedical Network Research on Rare Diseases (CIBERER), Madrid, Spain; 4Department of Pediatric Surgery and Organ Transplantation, Children's Memorial Health Institute, Warsaw, Poland; 5Department of Nephrology, Kidney Transplantation and Arterial Hypertension, Children's Memorial Health Institute, Warsaw, Poland; 6ERN-TransplantChild, La Paz University Hospital, Madrid, Spain; 7Department of Pediatric Hepatology & Liver Transplant, La Paz University Hospital, Madrid, Spain; 8Molecular hepatology, La Paz Institute of Biomedical Research (IdiPAZ), Madrid, Spain; 9Paediatric Nephrology Department, La Paz University Hospital, Madrid, Spain; 10Paediatric Gastroenterology Intestinal Rehabilitation Unit, La Paz University Hospital, Madrid, Spain; 11Paediatric Cardiology Department, La Paz University Hospital, Madrid, Spain; 12Paediatric Pneumology Department, La Paz University Hospital, Madrid, Spain; 13Department of Transplantation Surgery, Karolinska University Hospital, Stockholm, Sweden; 14Paediatric Gastroenterology, Digestive Endoscopy, Hepatology, Azienda Ospedaliera di Padova, Padova, Italy; 15Centre for Paediatric Oncology and Haematology, Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania; 16Pediatric Nephrology, University Medical Center, Amsterdam, Netherlands; 17Paediatric Nephrology Department, Centro Hospitalar Universitário de Santo António, Porto, Portugal; 18Paediatric Nephrology Department, AOU Città della Salute e della Scienza di Torino, Regina Margherita Children's Hospital, Turin, Italy; 19Pediatric Nephrology and Renal Transplant Department, Hospital Sant Joan de Déu, Barcelona, Spain; 20Hematopoietic Stem Cell Transplantation and Cellular Therapy Unit, Hospital Infantil Universitario Niño Jesús, Madrid, Spain; 21Paediatric Transplant Unit, La Paz University Hospital, Madrid, Spain; 22Department of Pediatric Surgery, La Paz University Hospital, Madrid, Spain; 23Congenital malformations and transplantation, La Paz Institute of Biomedical Research (IdiPAZ), Madrid, Spain
Introduction: The European Reference Network on Transplantation in Children (ERN-TransplantChild) has established the European Paediatric Transplant Registry (PETER). PETER is based on a transversal approach regardless of the type of transplant [solid organ transplant (SOT) or haemopoietic stem cell transplant (HSCT)], integrating variables from the different phases of the transplant process with the quality of life reports of patient-reported outcome measures (PROMs). The main objective is to describe the state of health of transplant patients of pediatric age, from their inclusion in the waiting list and during post-transplant follow-up.
Methods: A prospective enrollment of paediatric transplant recipients (i.e., transplants performed <18 years of age) was performed from 2020 to February 2025 among 10 members of the ERN TransplantChild. PETER registry was approved by the ethical committee of the ERN coordinating centre (La Paz University Hospital, Madrid, Spain) and ratified in the participating hospitals. Patient demographic, transplantation, and follow up data were collected and statistically analysed.
Results: 568 patients (58% males) were enrolled to the PETER registry at 16 transplantation progras (13 SOT and 3 HSCT) from 7 European countries. 580 transplantation procedures have been performed (heart: 8, HSCT: 9, intestinal: 8, kidney: 258, liver: 280, lung: 2, combined: 15) and 2 patients are on the transplant waiting list. In one third of the patients, the age at which symptoms/signs first appeared was in the neonatal period. The median age of the patients at the time of the transplant procedure was 99.7 months (IQR 31.15-168.75 months) and the median time from inclusion in the waiting list to SOT was 4.3 months (IQR 1.5–11.3 months). The main indication for transplantation by type of transplant was: heart: restrictive cardiomyopathy (50%), HSCT: acute lymphoblastic leukemia (44%), intestinal: multiple intestinal atresia (25%), kidney: congenital anomalies of the kidney and urinary tract (CAKUT) (61%), liver: biliary atresia (39%), lung: pulmonary hypertension (50%). 73% of SOT had good graft function, whereas 2.5% had primary graft failure. Acute graft rejection was detected in 13% of SOT. Thirty patients died (5.2%). The median time from transplantation to death was 32 days (IQR 5–90 days).
Conclusion: The PETER registry offers valuable insights into paediatric transplant outcomes across Europe, encompassing both SOT and HSCT. The data highlights variations in transplant indications, graft survival, and patient outcomes, providing essential information for future research and clinical practice. Ongoing follow-up and inclusion of PROMs will further improve understanding of long-term health and quality of life for paediatric transplant recipients.
This abstract is part of project ‘947629/PETER’ funded by the European Union’s Health Programme (2014- 2020). PETER is also supported by the European Reference Network for Transplantation in Children (ERN- TransplantChild)..
[1] Paediatric transplantation
[2] European Reference Network
[3] ERN-TransplantChild
[4] Registry
[5] Solid organ transplantation
[6] Haematopoietic stem cell transplantation
[7] Graft rejection
[8] Patient-reported outcome measures