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

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dc.contributor.authorALPAY, HARİKA
dc.contributor.authorsDe Rechter, Stephanie; Bockenhauer, Detlef; Guay-Woodford, Lisa M.; Liu, Isaac; Mallett, Andrew J.; Soliman, Neveen A.; Sylvestre, Lucimary C.; Schaefer, Franz; Liebau, Max C.; Mekahli, Djalila; Adamczyk, P.; Akinci, N.; Alpay, H.; Ardelean, C.; Ayasreh, N.; Aydin, Z.; Bael, A.; Baudouin, V; Bayrakci, U. S.; 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. A.; 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. W.; 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. C.; 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. K.; 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. Y.; Yuksel, S.; Zachwieja, K.
dc.date.accessioned2022-03-14T10:05:33Z
dc.date.available2022-03-14T10:05:33Z
dc.date.issued2019-09
dc.description.abstractBackground: 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. Methods: Global ADPedKD is an international multicenter observational study focusing on childhood-diagnosed ADPKD. This collaborative project is based on interoperable Web-based databases, comprising 7 regional and independent but uniformly organized chapters, namely Africa, Asia, Australia, Europe, North America, South America, and the United Kingdom. In the database, a detailed basic data questionnaire, including genetics, is used in combination with data entry from follow-up visits, to provide both retrospective and prospective longitudinal data on clinical, radiologic, and laboratory findings, as well as therapeutic interventions. Discussion: The global ADPedKD initiative aims to characterize in detail the most extensive international pediatric ADPKD cohort reported to date, providing evidence for the development of unified diagnostic, follow-up, and treatment recommendations regarding modifiable disease factors. Moreover, this registry will serve as a platform for the development of clinical and/or biochemical markers predicting the risk of early and progressive disease.
dc.identifier.doi10.1016/j.ekir.2019.05.015
dc.identifier.issn2468-0249
dc.identifier.pubmed31517146
dc.identifier.urihttps://hdl.handle.net/11424/244029
dc.identifier.wosWOS:000484384000009
dc.language.isoeng
dc.publisherELSEVIER SCIENCE INC
dc.relation.ispartofKIDNEY INTERNATIONAL REPORTS
dc.rightsinfo:eu-repo/semantics/openAccess
dc.subjectADPKD
dc.subjectADPedKD Registry
dc.subjectchildren
dc.subjectlongitudinal
dc.subjectDOMINANT POLYCYSTIC KIDNEY
dc.subjectRENAL CONCENTRATING CAPACITY
dc.subjectLEFT-VENTRICULAR MASS
dc.subjectBLOOD-PRESSURE
dc.subjectCARDIOVASCULAR-ABNORMALITIES
dc.subjectDISEASE ADPKD
dc.subjectPROGRESSION
dc.subjectVOLUME
dc.subjectCHILDHOOD
dc.subjectSPECTRUM
dc.titleADPedKD: A Global Online Platform on the Management of Children With ADPKD
dc.typearticle
dspace.entity.typePublication
local.avesis.idc1bceabe-3198-4ccf-a401-dac0595f1697
local.import.packageSS16
local.indexed.atWOS
local.journal.numberofpages14
local.journal.quartileQ1
oaire.citation.endPage1284
oaire.citation.issue9
oaire.citation.startPage1271
oaire.citation.titleKIDNEY INTERNATIONAL REPORTS
oaire.citation.volume4
relation.isAuthorOfPublication102b331c-4c62-4795-880d-234f6b72fa6a
relation.isAuthorOfPublication.latestForDiscovery102b331c-4c62-4795-880d-234f6b72fa6a

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