ERKNet

Rare and complex kidney diseases comprise a wide range of congenital, hereditary and acquired disorders. It is estimated that at least 2 million Europeans are affected by rare kidney diseases, with glomerulopathies and congenital kidney malformations each accounting for approximately 1 million cases. In addition, inherited tubulopathies, tubulointerstitial diseases and thrombotic microangiopathies represent a number of rare and ultrarare diseases of high clinical relevance.

State-of-the-art diagnostic tools can provide valuable information about disease prognosis and therapeutic options. However, access to testing is not universal. Due to delayed diagnosis and delayed treatment, many rare kidney diseases progress to renal failure.

This ERN will seek to improve standards of diagnosis and treatment across Europe. The network will establish a consensus on rational diagnostic algorithms for patients presenting with signs and symptoms of renal disease, including standard criteria for genetic testing in cases of suspected hereditary kidney disease. Working groups will then define clinical pathways for therapeutic management after thorough analysis of available treatments.

Online consultation services will improve management of new and complex cases. Access to a virtual consultation board will be complemented by administrative measures to facilitate patient travel to specialised centres where necessary, in line with the EU Cross-border Healthcare Directive and Social Security Regulation. A series of webinars will be developed for teaching and training health professionals.

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TitleAuthorsDateIssue name
Predictors of augmented renal clearance based on iohexol plasma clearance in critically ill children.Dhont E, Van Der Heggen T, Snauwaert E, Willems J, Croubels S, Delanghe J, De Waele JJ, Colman R, Vande Walle J, De Paepe P, De Cock PA2024-05-01Pediatric nephrology (Berlin, Germany)
Claudin-10 Expression and the Gene Expression Pattern of Thick Ascending Limb Cells.Brideau G, Cheval L, Griveau C, Ling WE, Lievre L, Crambert G, Müller D, Broćić J, Cherchame E, Houillier P, Prot-Bertoye C2024-04-03International journal of molecular sciences
X-linked hypophosphatemia: The value of feedback focus groups to assess patient and caregiver needs.Wagner E, Bertholet-Thomas A, Romier M, Loin L, Lemoine S, Vignot E, Flammier S, Garnier C, De-Mul A, Feutrier C, Juillard S, Thivichon-Prince B, Lienhart G, Bacchetta J2024-04-01European journal of medical genetics
Have We Neglected to Study Target-Site Drug Exposure in Children? A Systematic Review of the Literature.Hermans E, Meersschaut J, Van Herteryck I, Devreese M, Walle JV, De Paepe P, De Cock PA2024-03-29Clinical pharmacokinetics
Investigating the use of finerenone in children with chronic kidney disease and proteinuria: design of the FIONA and open-label extension studies.Schaefer F, Montini G, Kang HG, Walle JV, Zaritsky J, Schreuder MF, Litwin M, Scalise A, Scott H, Potts J, Iveli P, Breitenstein S, Warady BA2024-03-21Trials
Discontinuing absorbent pants in children with bedwetting: a randomized controlled trial.Breinbjerg A, Kamperis K, Thorsteinsson K, Jørgensen CS, Dossche L, Rayner J, Zhang J, Rodrigues DG, Borch L, Hagstrøm S, Tekgül S, Walle JV, Rittig S2024-03-12European journal of pediatrics
Time-Varying Determinants of Graft Failure in Pediatric Kidney Transplantation in Europe.Coens F, Knops N, Tieken I, Vogelaar S, Bender A, Kim JJ, Krupka K, Pape L, Raes A, Tönshoff B, Prytula A2024-03-01Clinical journal of the American Society of Nephrology : CJASN
Is shrunken pore syndrome also a reality in children?Roussel M, Bacchetta J, Sellier-Leclerc AL, Lemoine S, De Mul A, Derain Dubourg L2024-02-01Journal of internal medicine
The development of the Belgian paediatric clinical trial network.Degraeuwe E, Persijn L, Nuytinck L, Allegaert K, De Taeye L, Gasthuys E, Christiaens D, Karamaria S, Raes A, Turner M, Vande Walle J2024-02-01Acta clinica Belgica
Population pharmacokinetics of lisinopril in hypertensive children and adolescents with normal to mildly reduced kidney function.Sandra L, Degraeuwe E, De Bruyne P, De Baere S, Croubels S, Van Bocxlaer JFP, Raes A, Vande Walle J, Gasthuys E, Vermeulen A2024-02-01British journal of clinical pharmacology
Exploring lifelong overactive bladder: Transitions, evidence, and clinical implications; A modified Delphi process.Bou Kheir G, Verbakel I, Vande Walle J, Wyndaele M, Sinha S, Arlandis S, Raes A, Abrams P, Wein A, Hervé F, Everaert K2024-01-30Neurourology and urodynamics
Introductory editorial: Lifelong LUTS, a matter of transition?Everaert K, Bou Kheir G, Vande Walle J, Verbakel I, Hervé F2024-01-30Neurourology and urodynamics
Concluding editorial: Lifelong LUTS, a matter of transition?Everaert K, Bou Kheir G, Vande Walle J, Verbakel I, Arlandis S, Hervé F2024-01-30Neurourology and urodynamics
Reassuring Data on the Cardiovascular Risk in Adults With X-linked Hypophosphatemia Receiving Conventional Therapy.Bouzemane A, Vignot E, Derain Dubourg L, De Mul A, Molin A, Chapurlat R, Fontanges E, Delsart D, Akbari A, Huang SHS, McIntyre CW, Bacchetta J, Lemoine S2024-01-18The Journal of clinical endocrinology and metabolism
Microdialysis as a safe and feasible method to study target-site piperacillin-tazobactam disposition in septic piglets and children.Hermans E, Devreese M, Zeitlinger M, Dhont E, Verougstraete N, Colman R, Vande Walle J, De Paepe P, De Cock PA2023-11-01International journal of antimicrobial agents
European expert recommendations on clinical investigation and evaluation of high-risk medical devices for children.Guerlich K, Patro-Golab B, Barnacle A, Baumann U, Eicken A, Fraser AG, Gruszfeld D, Haas NA, Jonker AH, Kammermeier M, Kenny D, Kolaček S, Lapatto R, Maconochie I, Mader S, McGauran G, Melvin T, Muensterer O, Piscoi P, Romano A, Saxena AK, Schneider DT, Turner MA, Walle JV, Koletzko B2023-11-01Acta paediatrica (Oslo, Norway : 1992)
Favorable course of leptospirosis and hantavirus-induced acute tubulointerstitial nephritis under corticosteroid treatment.Matthys A, Dehoorne J, Dendooven A, Schelstraete P, Prytuła A2023-11-01Pediatric nephrology (Berlin, Germany)
The role of renal circadian biorhythms in lifelong LUTS.Hervé F, Vande Walle J, Raes A, Haddad R, Monaghan T, Drake MJ, Kamperis K, Dossche L, Zipkin J, Weiss J, Verbakel I, Bou Kheir G, Everaert K2023-10-17Neurourology and urodynamics
Adult height improved over decades in patients with X-linked hypophosphatemia: a cohort study.Boros E, Ertl DA, Berkenou J, Audrain C, Lecoq AL, Kamenicky P, Briot K, Amouroux C, Zhukouskaya V, Gueorguieva I, Mignot B, Girerd B, Porquet Bordes V, Salles JP, Edouard T, Coutant R, Bacchetta J, Linglart A, Rothenbuhler A2023-10-17European journal of endocrinology
Anthropometric measures and patient outcome in pediatric chronic kidney disease.Prytuła A, Grenda R2023-10-01Pediatric nephrology (Berlin, Germany)
Prevalence and clinical significance of ANCA positivity in lupus nephritis: a case series of 116 patients and literature review.Lacetera R, Calatroni M, Roggero L, Radice A, Pozzi MR, Reggiani F, Sciascia S, Trezzi B, Roccatello D, Minetti E, Moroni G, Sinico RA2023-05-01Journal of nephrology
Pediatric urolithiasis: what can pediatricians expect from radiologists?Bernardor J, Bidault V, Bacchetta J, Cabet S2023-04-01Pediatric radiology
Efficacy and safety of lumasiran for infants and young children with primary hyperoxaluria type 1: 12-month analysis of the phase 3 ILLUMINATE-B trial.Hayes W, Sas DJ, Magen D, Shasha-Lavsky H, Michael M, Sellier-Leclerc AL, Hogan J, Ngo T, Sweetser MT, Gansner JM, McGregor TL, Frishberg Y2023-04-01Pediatric nephrology (Berlin, Germany)
Potential of Urine Biomarkers CHI3L1, NGAL, TIMP-2, IGFBP7, and Combinations as Complementary Diagnostic Tools for Acute Kidney Injury after Pediatric Cardiac Surgery: A Prospective Cohort Study.Vandenberghe W, De Loor J, Francois K, Vandekerckhove K, Herck I, Vande Walle J, Peperstraete H, Bové T, De Wolf D, Nuytinck L, De Waele JJ, Meyer E, Hoste EAJ2023-03-09Diagnostics (Basel, Switzerland)
Hydration and Nephrolithiasis in Pediatric Populations: Specificities and Current Recommendations.Injeyan M, Bidault V, Bacchetta J, Bertholet-Thomas A2023-02-01Nutrients
Lumasiran for Advanced Primary Hyperoxaluria Type 1: Phase 3 ILLUMINATE-C Trial.Michael M, Groothoff JW, Shasha-Lavsky H, Lieske JC, Frishberg Y, Simkova E, Sellier-Leclerc AL, Devresse A, Guebre-Egziabher F, Bakkaloglu SA, Mourani C, Saqan R, Singer R, Willey R, Habtemariam B, Gansner JM, Bhan I, McGregor T, Magen D2023-02-01American journal of kidney diseases : the official journal of the National Kidney Foundation
Electrocardiogram analysis in Anderson-Fabry disease: a valuable tool for progressive phenotypic expression tracking.Parisi V, Baldassarre R, Ferrara V, Ditaranto R, Barlocco F, Lillo R, Re F, Marchi G, Chiti C, Di Nicola F, Catalano C, Barile L, Schiavo MA, Ponziani A, Saturi G, Caponetti AG, Berardini A, Graziosi M, Pasquale F, Salamon I, Ferracin M, Nardi E, Capelli I, Girelli D, Gimeno Blanes JR, Biffi M, Galiè N, Olivotto I, Graziani F, Biagini E2023-01-01Frontiers in cardiovascular medicine
Tubular phosphate handling: references from child to adulthood in the era of standardized serum creatinine.Derain Dubourg L, Aurelle M, Chardon L, Flammier S, Lemoine S, Bacchetta J2022-10-19Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association
Calcium homeostasis and hyperparathyroidism: Nephrologic and endocrinologic points of view.Lemoine S, Figueres L, Bacchetta J, Frey S, Dubourg L2022-08-01Annales d'endocrinologie
Benign and malignant proliferation in idiopathic nephrotic syndrome: a French cohort study.Cébron C, Godron-Dubrasquet A, Aladjidi N, Roussey G, Boyer O, Avramescu M, Baudouin V, Terzic J, Allain-Launay E, Rieux-Laucat F, Decramer S, Simon T, Harambat J2022-08-01Pediatric nephrology (Berlin, Germany)
Potassium and fiber: a controversial couple in the nutritional management of children with chronic kidney disease.El Amouri A, Delva K, Foulon A, Vande Moortel C, Van Hoeck K, Glorieux G, Van Biesen W, Vande Walle J, Raes A, Snauwaert E, Eloot S2022-07-01Pediatric nephrology (Berlin, Germany)
Potential Renal Damage Biomarkers in Alport Syndrome-A Review of the Literature.Gomes AM, Lopes D, Almeida C, Santos S, Malheiro J, Lousa I, Caldas Afonso A, Beirão I2022-06-30International journal of molecular sciences
Vitamin D and calcium intakes in general pediatric populations: A French expert consensus paper.Bacchetta J, Edouard T, Laverny G, Bernardor J, Bertholet-Thomas A, Castanet M, Garnier C, Gennero I, Harambat J, Lapillonne A, Molin A, Naud C, Salles JP, Laborie S, Tounian P, Linglart A2022-05-01Archives de pediatrie : organe officiel de la Societe francaise de pediatrie
Mental Health Outcomes Among Parents of Children With a Chronic Disease During the COVID-19 Pandemic: The Role of Parental Burn-Out.Wauters A, Vervoort T, Dhondt K, Soenens B, Vansteenkiste M, Morbée S, Waterschoot J, Haerynck F, Vandekerckhove K, Verhelst H, Van Aken S, Raes A, Schelstraete P, Walle JV, Van Hoecke E2022-04-08Journal of pediatric psychology
Randomized Clinical Trial on the Long-Term Efficacy and Safety of Lumasiran in Patients With Primary Hyperoxaluria Type 1.Hulton SA, Groothoff JW, Frishberg Y, Koren MJ, Overcash JS, Sellier-Leclerc AL, Shasha-Lavsky H, Saland JM, Hayes W, Magen D, Moochhala SH, Coenen M, Simkova E, Garrelfs SF, Sas DJ, Meliambro KA, Ngo T, Sweetser MT, Habtemariam BA, Gansner JM, McGregor TL, Lieske JC2022-03-01Kidney international reports
Phase 3 trial of lumasiran for primary hyperoxaluria type 1: A new RNAi therapeutic in infants and young children.Sas DJ, Magen D, Hayes W, Shasha-Lavsky H, Michael M, Schulte I, Sellier-Leclerc AL, Lu J, Seddighzadeh A, Habtemariam B, McGregor TL, Fujita KP, Frishberg Y2022-03-01Genetics in medicine : official journal of the American College of Medical Genetics
Off-label use of cinacalcet in pediatric primary hyperparathyroidism: A French multicenter experience.Bernardor J, Flammier S, Salles JP, Amouroux C, Castanet M, Lienhardt A, Martinerie L, Damgov I, Linglart A, Bacchetta J2022-01-01Frontiers in pediatrics
Impact of New vs. Old International Children's Continence Society Standardization on the Classification of Treatment Naïve Enuresis Children at Screening: The Value of Voiding Diaries and Questionnaires.Karamaria S, Ranguelov N, Hansen P, De Boe V, Verleyen P, Segers N, Walle JV, Dossche L, Bael A2022-01-01Frontiers in pediatrics
Clinical exome sequencing is a powerful tool in the diagnostic flow of monogenic kidney diseases: an Italian experience.Vaisitti T, Sorbini M, Callegari M, Kalantari S, Bracciamà V, Arruga F, Vanzino SB, Rendine S, Togliatto G, Giachino D, Pelle A, Cocchi E, Benvenuta C, Baldovino S, Rollino C, Fenoglio R, Sciascia S, Tamagnone M, Vitale C, Calabrese G, Biancone L, Bussolino S, Savoldi S, Borzumati M, Cantaluppi V, Chiappero F, Ungari S, Peruzzi L, Roccatello D, Amoroso A, Deaglio S2021-10-01Journal of nephrology
European Reference Networks: challenges and opportunities.Tumiene B, Graessner H, Mathijssen IM, Pereira AM, Schaefer F, Scarpa M, Blay JY, Dollfus H, Hoogerbrugge N2021-04-01Journal of community genetics
Cryoglobulinemic glomerulonephritis: clinical presentation and histological features, diagnostic pitfalls and controversies in the management. State of the art and the experience on a large monocentric cohort treated with B cell depletion therapy.Rossi D, Sciascia S, Fenoglio R, Ferro M, Baldovino S, Kamgaing J, Ventrella F, Kalikatzaros I, Viziello L, Solfietti L, Barreca A, Roccatello D2021-04-01Minerva medica
Rare diseases of phosphate and calcium metabolism: Crossing glances between nephrology and endocrinology.Mosca M, Bernardor J, Lemoine S, Bertholet-Thomas A, Bacchetta J2021-02-01Annales d'endocrinologie
Intermittent Bi-Daily Sub-cutaneous Teriparatide Administration in Children With Hypoparathyroidism: A Single-Center Experience.Bernardor J, Flammier S, Cabet S, Lemoine S, Chapurlat R, Molin A, Bertholet-Thomas A, Bacchetta J2021-01-01Frontiers in pediatrics
Pediatric Challenges in Robot-Assisted Kidney Transplantation.Grammens J, Schechter MY, Desender L, Claeys T, Sinatti C, VandeWalle J, Vermassen F, Raes A, Vanpeteghem C, Prytula A, Silay MS, Breda A, Decaestecker K, Spinoit AF2021-01-01Frontiers in surgery
Anti-Xa monitoring improves low-molecular-weight heparin effectiveness in patients with SARS-CoV-2 infection.Trunfio M, Salvador E, Cabodi D, Marinaro L, Alcantarini C, Gaviraghi A, Trentalange A, Lipani F, Sciascia S, Roccatello D, Bonora S, Di Perri G, Calcagno A2020-12-01Thrombosis research
Screening for Cancer in Patients with Glomerular Diseases.Plaisier E, Ronco P2020-06-08Clinical journal of the American Society of Nephrology : CJASN
The ANTENATAL multicentre study to predict postnatal renal outcome in fetuses with posterior urethral valves: objectives and design.Buffin-Meyer B, Klein J, van der Zanden LFM, Levtchenko E, Moulos P, Lounis N, Conte-Auriol F, Hindryckx A, Wühl E, Persico N, Oepkes D, Schreuder MF, Tkaczyk M, Ariceta G, Fossum M, Parvex P, Feitz W, Olsen H, Montini G, Decramer S, Schanstra JP2020-06-01Clinical kidney journal
Tailoring Tofacitinib Oral Therapy in Rheumatoid Arthritis: The TuTORApp-A Usability Study.Sciascia S, Radin M, Cecchi I, Di Nunzio P, Buccarano N, Di Gregorio F, Valeria M, Osella S, Crosasso P, Favuzzi MD, Rubini E, Foddai SG, Baldovino S, Roccatello D, Rossi D2020-05-15International journal of environmental research and public health
Long-term outcome of methylmalonic aciduria after kidney, liver, or combined liver-kidney transplantation: The French experience.Brassier A, Krug P, Lacaille F, Pontoizeau C, Krid S, Sissaoui S, Servais A, Arnoux JB, Legendre C, Charbit M, Scemla A, Francoz C, Benoist JF, Schiff M, Mochel F, Touati G, Broué P, Cano A, Tardieu M, Querciagrossa S, Grévent D, Boyer O, Dupic L, Oualha M, Girard M, Aigrain Y, Debray D, Capito C, Ottolenghi C, Salomon R, Chardot C, de Lonlay P2020-03-01Journal of inherited metabolic disease
Anticoagulation in patients with concomitant lupus nephritis and thrombotic microangiopathy: a multicentre cohort study.Sciascia S, Yazdany J, Dall'Era M, Fenoglio R, Radin M, Aggarwal I, Cuadrado MJ, Schreiber K, Barreca A, Papotti M, Roccatello D2019-07-01Annals of the rheumatic diseases
Cryoglobulinaemia.Roccatello D, Saadoun D, Ramos-Casals M, Tzioufas AG, Fervenza FC, Cacoub P, Zignego AL, Ferri C2018-08-02Nature reviews. Disease primers
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Last update: April 19th, 2024 on 06:21