ADPedKD
ADPedKD aggregates multicenter clinical, genetic, radiologic, laboratory, and therapeutic data to support research and management of pediatric autosomal dominant polycystic kidney disease (ADPKD).
Key Features:
- International Collaboration: A multicenter observational study uniting researchers, clinicians, and patients across seven regional chapters: Africa, Asia, Australia, Europe, North America, South America, and the United Kingdom.
- Web-Based Database: Interoperable web-based databases enable standardized data collection, retrospective analysis, and prospective longitudinal studies.
- Comprehensive Data Collection: A standardized basic data questionnaire including genetic profiling plus follow-up visits capture clinical, radiologic, laboratory findings, and therapeutic interventions.
- Focus on Pediatric Population: Targeted data collection for children diagnosed with or at risk of developing ADPKD to characterize pediatric disease course.
- Development of Guidelines and Markers: Characterization of a large pediatric cohort to develop unified diagnostic criteria, follow-up protocols, treatment recommendations, and to identify clinical and biochemical markers predictive of early onset and progression.
- Socio-Economic Impact: Enables assessment of the long-term healthcare burden and socio-economic impact of pediatric ADPKD on patient outcomes and health systems.
Scientific Applications:
- Genetic Research: Investigating the role of PKD1 and PKD2 gene mutations in disease onset and progression.
- Clinical Studies: Evaluating the effectiveness of treatment modalities and interventions in slowing disease progression.
- Epidemiological Analysis: Understanding the global distribution and impact of pediatric ADPKD across different populations.
Methodology:
Multicenter observational study using interoperable web-based databases with a uniform basic data questionnaire and genetic profiling, applying data standardization and validation, incorporating retrospective analysis and prospective longitudinal follow-up visits for dynamic clinical, radiologic, and laboratory data collection.
Topics
Collections
Details
- Tool Type:
- web application
- Added:
- 1/20/2021
- Last Updated:
- 5/13/2021
Operations
Publications
De Rechter S, Bockenhauer D, Guay-Woodford LM, Liu I, Mallett AJ, Soliman NA, Sylvestre LC, Schaefer F, Liebau MC, Mekahli D, 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, Boyer O, Bryłka A, Çalışkan S, Cambier A, Camelio A, Carbone V, Charbit M, Chiodini B, Chirita A, Çiçek N, Cerkauskiene R, Collard L, Conceiçao 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 M, Giani M, Giordano M, Girisgen I, Godefroid N, Godron-Dubrasquet A, Gojkovic I, Gonzalez E, Gökçe I, Groothoff J, Guarino S, Guffens A, Hansen P, Harambat J, Haumann S, He G, Heidet L, Helmy R, Hemery F, Hooman N, llanas 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, Özcan 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, Saygılı 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, Szczepańska 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, Wühl E, Yildirim Z, Yüksel S, Zachwieja K. ADPedKD: A Global Online Platform on the Management of Children With ADPKD. Kidney International Reports. 2019;4(9):1271-1284. doi:10.1016/j.ekir.2019.05.015. PMID:31517146. PMCID:PMC6732756.