De Rechter, Stephanie, Bockenhauer, Detlef ORCID: 0000-0001-5878-941X, 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. and Zachwieja, K. (2019). ADPedKD: A Global Online Platform on the Management of Children With ADPKD. Kidney Int. Rep., 4 (9). S. 1271 - 1285. NEW YORK: ELSEVIER SCIENCE INC. ISSN 2468-0249

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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. 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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
De Rechter, StephanieUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bockenhauer, DetlefUNSPECIFIEDorcid.org/0000-0001-5878-941XUNSPECIFIED
Guay-Woodford, Lisa M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Liu, IsaacUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mallett, Andrew J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Soliman, Neveen A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sylvestre, Lucimary C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schaefer, FranzUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Liebau, Max C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mekahli, DjalilaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Adamczyk, P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Akinci, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Alpay, H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ardelean, C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ayasreh, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Aydin, Z.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bael, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Baudouin, VUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bayrakci, U. S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bensman, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bialkevich, H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Biebuyck, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Boyer, O.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bjanid, O.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Brylka, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Caliskan, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cambier, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Camelio, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Carbone, VUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Charbit, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Chiodini, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Chirita, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cicek, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cerkauskiene, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Collard, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Conceicao, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Constantinescu, IUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Couderc, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Crapella, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cvetkovic, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Dima, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Diomeda, F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Docx, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Dolan, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Dossier, C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Drozdz, D.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Drube, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Dunand, O.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Dusan, P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Eid, L. A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Emma, F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Espino Hernandez, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Fila, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Furlano, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gafencu, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ghuysen, MsUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Giani, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Giordano, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Girisgen, IUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Godefroid, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Godron-Dubrasquet, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gojkovic, IUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gonzalez, E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gokce, IUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Groothoff, J. W.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Guarino, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Guffens, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hansen, P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Harambat, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Haumann, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
He, G.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Heidet, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Helmy, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hemery, F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hooman, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ilanas, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jankauskiene, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Janssens, P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Karamaria, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kazyra, IUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Koenig, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Krid, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Krug, P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kwon, VUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
La Manna, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Leroy, VUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Litwin, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lombet, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Longo, G.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lungu, A. C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mallawaarachchi, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Marin, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Marzuillo, P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Massella, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mastrangelo, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
McCarthy, H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Miklaszewska, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Moczulska, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Montini, G.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Morawiec-Knysak, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Morin, D.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Murer, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Negru, IUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Nobili, F.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Obrycki, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Otoukesh, H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ozcan, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Pape, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Papizh, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Parvex, P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Pawlak-Bratkowska, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Prikhodina, L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Prytula, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Quinlan, C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Raes, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ranchin, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ranguelov, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Repeckiene, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ronit, C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Salomon, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Santagelo, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Saygili, S. K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schaefer, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schreuder, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schurmans, T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Seeman, T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Segers, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sinha, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Snauwaert, E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Spasojevic, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Stabouli, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Stoica, C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Stroescu, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Szczepanik, E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Szczepanska, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Taranta-Janusz, K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Teixeira, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Thumfart, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Tkaczyk, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Torra, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Torres, D.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Tram, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Utsch, B.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vande Walle, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vieux, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vitkevic, R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wilhelm-Bals, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wuehl, E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Yildirim, Z. Y.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Yuksel, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Zachwieja, K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-143065
DOI: 10.1016/j.ekir.2019.05.015
Journal or Publication Title: Kidney Int. Rep.
Volume: 4
Number: 9
Page Range: S. 1271 - 1285
Date: 2019
Publisher: ELSEVIER SCIENCE INC
Place of Publication: NEW YORK
ISSN: 2468-0249
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
DOMINANT POLYCYSTIC KIDNEY; RENAL CONCENTRATING CAPACITY; LEFT-VENTRICULAR MASS; BLOOD-PRESSURE; CARDIOVASCULAR-ABNORMALITIES; DISEASE ADPKD; PROGRESSION; VOLUME; CHILDHOOD; SPECTRUMMultiple languages
Urology & NephrologyMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/14306

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