ADPedKD: A Global Online Platform on the Management of Children With ADPKD

De Rechter, Stephanie; Bockenhauer, Detlef; Guay-Woodford, Lisa; Liu, Isaac; Mallett, Andrew; Soliman, Neveen; Sylvestre, Lucimary; Schaefer, Franz; Liebau, Max; Mekahli, Djalila; Adamczyk, P.; Akinci, N.; Alpay, H.; Ardelean, C.; Ayasreh, N.; Aydin, Z.; Bael, A.; Baudouin, V; Bayrakci, U.; Bensman, A.; Bialkevich, H.; Biebuyck, A.; Boyer, O.; Bjanid, O.; Brylka, A.; Caliskan, S.; Cambier, A.; Camelio, A.; Carbone, V; Charbit, M.; Chiodini, B.; Chirita, A.; Cicek, N.; Cerkauskiene, R.; Collard, L.; Conceicao, M.; Constantinescu, I; Couderc, A.; Crapella, B.; Cvetkovic, M.; Dima, B.; Diomeda, F.; Docx, M.; Dolan, N.; Dossier, C.; Drozdz, D.; Drube, J.; Dunand, O.; Dusan, P.; Eid, L.; Emma, F.; Espino Hernandez, M.; Fila, M.; Furlano, M.; Gafencu, M.; Ghuysen, Ms; Giani, M.; Giordano, M.; Girisgen, I; Godefroid, N.; Godron-Dubrasquet, A.; Gojkovic, I; Gonzalez, E.; Gokce, I; Groothoff, J.; Guarino, S.; Guffens, A.; Hansen, P.; Harambat, J.; Haumann, S.; He, G.; Heidet, L.; Helmy, R.; Hemery, F.; Hooman, N.; Ilanas, B.; Jankauskiene, A.; Janssens, P.; Karamaria, S.; Kazyra, I; Koenig, J.; Krid, S.; Krug, P.; Kwon, V; La Manna, A.; Leroy, V; Litwin, M.; Lombet, J.; Longo, G.; Lungu, A.; Mallawaarachchi, A.; Marin, A.; Marzuillo, P.; Massella, L.; Mastrangelo, A.; McCarthy, H.; Miklaszewska, M.; Moczulska, A.; Montini, G.; Morawiec-Knysak, A.; Morin, D.; Murer, L.; Negru, I; Nobili, F.; Obrycki, L.; Otoukesh, H.; Ozcan, S.; Pape, L.; Papizh, S.; Parvex, P.; Pawlak-Bratkowska, M.; Prikhodina, L.; Prytula, A.; Quinlan, C.; Raes, A.; Ranchin, B.; Ranguelov, N.; Repeckiene, R.; Ronit, C.; Salomon, R.; Santagelo, R.; Saygili, S.; Schaefer, S.; Schreuder, M.; Schurmans, T.; Seeman, T.; Segers, N.; Sinha, M.; Snauwaert, E.; Spasojevic, B.; Stabouli, S.; Stoica, C.; Stroescu, R.; Szczepanik, E.; Szczepanska, M.; Taranta-Janusz, K.; Teixeira, A.; Thumfart, J.; Tkaczyk, M.; Torra, R.; Torres, D.; Tram, N.; Utsch, B.; Vande Walle, J.; Vieux, R.; Vitkevic, R.; Wilhelm-Bals, A.; Wuehl, E.; Yildirim, Z.; Yuksel, S.; Zachwieja, K.

doi:10.1016/j.ekir.2019.05.015

ADPedKD: A Global Online Platform on the Management of Children With ADPKD

De Rechter S., Bockenhauer D., Guay-Woodford L. M., Liu I., Mallett A. J., Soliman N. A., ...More

KIDNEY INTERNATIONAL REPORTS, vol.4, no.9, pp.1271-1284, 2019 (SCI-Expanded)

Publication Type: Article / Article
Volume: 4 Issue: 9
Publication Date: 2019
Doi Number: 10.1016/j.ekir.2019.05.015
Journal Name: KIDNEY INTERNATIONAL REPORTS
Journal Indexes: Science Citation Index Expanded (SCI-EXPANDED), Emerging Sources Citation Index (ESCI), Scopus
Page Numbers: pp.1271-1284
Istanbul University Affiliated: Yes

Abstract

Background: Autosomal dominant polycystic kidney disease (ADPKD) is the most common monogenic cause of renal failure. For several decades, ADPKD was regarded as an adult-onset disease. In the past decade, it has become more widely appreciated that the disease course begins in childhood. However, evidence-based guidelines on how to manage and approach children diagnosed with or at risk of ADPKD are lacking. Also, scoring systems to stratify patients into risk categories have been established only for adults. Overall, there are insufficient data on the clinical course during childhood. We therefore initiated the global ADPedKD project to establish a large international pediatric ADPKD cohort for deep characterization.