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, HARİKA; 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, NESLİHAN; 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, İBRAHİM; 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

Atıf İçin Kopyala

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

KIDNEY INTERNATIONAL REPORTS, cilt.4, sa.9, ss.1271-1284, 2019 (SCI-Expanded)

Yayın Türü: Makale / Tam Makale
Cilt numarası: 4 Sayı: 9
Basım Tarihi: 2019
Doi Numarası: 10.1016/j.ekir.2019.05.015
Dergi Adı: KIDNEY INTERNATIONAL REPORTS
Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Emerging Sources Citation Index (ESCI), Scopus
Sayfa Sayıları: ss.1271-1284
Anahtar Kelimeler: ADPKD, ADPedKD Registry, children, longitudinal, DOMINANT POLYCYSTIC KIDNEY, RENAL CONCENTRATING CAPACITY, LEFT-VENTRICULAR MASS, BLOOD-PRESSURE, CARDIOVASCULAR-ABNORMALITIES, DISEASE ADPKD, PROGRESSION, VOLUME, CHILDHOOD, SPECTRUM
Marmara Üniversitesi Adresli: Evet

Özet

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.