Scientific Publications

When reporting papers as deliverables to the European Commission (EC), we can only include publications that:

1. are in PubMed-accredited scientific journals,
2. involve as major contributors at least two healthcare providers (HCPs) from two different Member States within the ERN, and
3. include an explicit acknowledgement or reference to ERN eUROGEN’s involvement e.g., “This work is generated within the European Reference Network for Rare Urogenital Diseases and Complex Conditions (ERN eUROGEN)” or “This work is supported by the ERN for Rare Urogenital Diseases and Complex Conditions (ERN eUROGEN)”. If the support is not financial, “(non-financially)” can be added in brackets after the word “supported” for additional clarification.

• Pellegrino C, Capitanucci ML, Forlini V, Zaccara A, Lena F, Sollini ML, Castelli E, Mosiello G. Posterior urethral valves: Role of prenatal diagnosis and long-term management of bladder function; a single center point of view and review of literature. Front Pediatr. 2023 Jan 6;10:1057092. doi: 10.3389/fped.2022.1057092.
• Pellegrino C, Forlini V, Lena F, Capitanucci ML, Diomedi Camassei F, Castelli E, Mosiello G. Onabotulinum Toxin A Intradetrusor Injections in Children with Neurogenic Lower Urinary Tract Dysfunction: Long-Term Histological Effects on the Bladder Wall. Biomedicines. 2023; 11(5):1300. doi: 10.3390/biomedicines11051300
• May M, Lebentrau S, Ayres B, Albersen M, Protzel C, Chahoud J, Brouwer OR, Pettaway CA, Pagliaro LC, Necchi A, Watkin N, Hakenberg OW, Spiess PE. The Goal of Achieving High-Quality Surgical First-Line Therapy in Patients with Penile Cancer Is Important; However, Some Collective Efforts Are Still Required in Order to Reach It. Curr. Oncol. 2023, 30, 1882–1892. Current Oncology. 2023; 30(4):4269-4274. doi: 10.3390/curroncol30040325
• Rawashdeh YF, Hvistendahl GM, Thorup J, Fossum M. Pediatric Neurology. Ugeskr Læger 2023;185:V09220582.
• Oomen L, De Wall LL, Krupka K, Tönshoff B, Wlodkowski T, Van Der Zanden LFM, Bonthuis M, Duus Weinreich ID, Koster-Kamphuis L, Feitz WFJ, Bootsma-Robroeks CMHHT. The strengths and complexities of European registries concerning paediatric kidney transplantation health care. Front Pediatr. 2023 March 23;11:10.3389. doi: 10.3389/fped.2023.1121282
• Pellegrino C, Capitanucci ML, Forlini V, Zaccara A, Lena F, Sollini ML, Castelli E, Mosiello G. Posterior urethral valves: Role of prenatal diagnosis and long-term management of bladder function; a single center point of view and review of literature. Front Pediatr. 2023 Jan 6;10:1057092. doi: 10.3389/fped.2022.1057092.
• Brouwer OR, Albersen M, Parnham A, Protzel C, Pettaway CA, Ayres B, Antunes-Lopes T, Barreto L, Campi R, Crook J, Fernández-Pello S, Greco I, van der Heijden MS, Johnstone PAS, Kailavasan M, Manzie K, Marcus JD, Necchi A, Oliveira P, Osborne J, Pagliaro LC, Garcia-Perdomo HA, Rumble RB, Sachdeva A, Sakalis VI, Zapala Ł, Sánchez Martínez DF, Spiess PE, Tagawa ST. European Association of Urology-American Society of Clinical Oncology Collaborative Guideline on Penile Cancer: 2023 Update. Eur Urol. 2023 Mar 7:S0302-2838(23)02638-6. doi: 10.1016/j.eururo.2023.02.027. [*]

• van der Zanden Loes F. M., Maj Carlo, Borisov Oleg, van Rooij Iris A. L. M., Quaedackers Josine S. L. T., Steffens Martijn, Schierbaum Luca, Schneider Sophia, Waffenschmidt Lea, Kiemeney Lambertus A. L. M., de Wall Liesbeth L. L., Heilmann Stefanie, Hofmann Aybike, Gehlen Jan, Schumacher Johannes, Szczepanska Maria, Taranta-Janusz Katarzyna, Kroll Pawel, Krzemien Grazyna, Szmigielska Agnieszka, Schreuder Michiel F., Weber Stefanie, Zaniew Marcin, Roeleveld Nel, Reutter Heiko, Feitz Wout F. J., Hilger Alina C. Genome-wide association study in patients with posterior urethral valves. Frontiers in Pediatrics. 2022 Sep 27. doi: 10.3389/fped.2022.988374 [*]
• Violani C, Grano C, Fernandes M, Prato AP, Feitz WFJ, Wijnen R, Battye M, Schwarzer N, Lemli A, Cavalieri D, Aminoff D. The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease: A European Survey. Eur J Pediatr Surg. 2022 Jul 13. doi: 10.1055/s-0042-1749212.
• Amerstorfer EE, Schmiedeke E, Samuk I, Sloots CEJ, van Rooij IALM, Jenetzky E, Midrio P, ARM-Net Consortium. Clinical Differentiation between a Normal Anus, Anterior Anus, Congenital Anal Stenosis, and Perineal Fistula: Definitions and Consequences—The ARM-Net Consortium Consensus. Children. 2022; 9(6):831. doi: 10.3390/children9060831
• Arora A, Rodriguez A, Necchi A, Albersen M, Zhu Y, Spiess PE, Prakash G. Global Implications in Caring for Penile Cancer: Similarities and Divergences. Semin Oncol Nurs. 2022 May 25:151283. doi: 10.1016/j.soncn.2022.151283.
• Cornes R, Earle W. Current Unmet Needs in Penile Cancer: The Way Forward? Semin Oncol Nurs. 2022 May 19:151282. doi: 10.1016/j.soncn.2022.151282.
• Souche E, Beltran S, Brosens E, Belmont JW, Fossum M, Riess O, Gilissen C, Ardeshirdavani A, Houge G, van Gijn M, Clayton-Smith J, Synofzik M, de Leeuw N, Deans ZC, Dincer Y, Eck SH, van der Crabben S, Balasubramanian M, Graessner H, Sturm M, Firth H, Ferlini A, Nabbout R, De Baere E, Liehr T, Macek M, Matthijs G, Scheffer H, Bauer P, Yntema HG, Weiss MM. Recommendations for whole genome sequencing in diagnostics for rare diseases. Eur J Hum Genet. 2022 May 16. doi: 10.1038/s41431-022-01113-x. [*]
• Capone, V., Persico, N., Berrettini, A. et al. Definition, diagnosis and management of fetal lower urinary tract obstruction: consensus of the ERKNet CAKUT-Obstructive Uropathy Work Group. Nat Rev Urol 19, 295–303 (2022). doi: 10.1038/s41585-022-00563-8 [*]
• Juul N, Cazals A, Hofmann A, Amesty V, Verkauskas G, Dobrowolska-Glazar B, Holmdahl G, Escolino M, Birraux J, Kovacs T, Kalfa N, Fossum M. How the First Year of COVID-19 Affected Elective Pediatric Urology Patients: A Longitudinal Study Based on Waiting Lists and Surveys From 10 European Centers. Front Public Health. 2022 Apr 28;10:874758. doi: 10.3389/fpubh.2022.874758. [*]
• Peard L, Gargollo P, Grant C, Strine A, De Loof M, Sinatti C, Spinoit AF, Hoebeke P, Cost NG, Rehfuss A, Alpert SA, Cranford W, Dugan AJ, Saltzman AF. Validation of the modified Bosniak classification system to risk stratify pediatric cystic renal masses: An international, multi-site study from the pediatric urologic oncology working group of the societies for pediatric urology. J Pediatr Urol. 2022 Apr;18(2):180.e1-180.e7. doi: 10.1016/j.jpurol.2021.12.001.
• Oomen L, Leijte E, Shilhan DE, Battye M, Feitz WFJ. Cross-Border Video Consultation Tool for Rare Urology: ERN eUROGEN’s Clinical Patient Management System [Internet]. Nijmegen, NL: ERN eUROGEN; 2022.
• Smits, R.M., Vissers, E., te Pas, R. et al. Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases. Orphanet J Rare Dis 17, 153 (2022). https://doi.org/10.1186/s13023-022-02305-w
• Thiem, C. E., Stegmann, J. D., Hilger, A. C., Waffenschmidt, L., Bendixen, C., Köllges, R., Schmiedeke, E., Schäfer, F.-M., Lacher, M., Kosch, F., Grasshoff-Derr, S., Kabs, C., Neser, J., Jenetzky, E., Fazaal, J., Schumacher, J., Hoefele, J., Ludwig, K. U., & Reutter, H. (2022). Re-sequencing of candidate genes FOXF1, HSPA6, HAAO, and KYNU in 522 individuals with VATER/VACTERL, VACTER/VACTERL-like association, and isolated anorectal malformation. Birth Defects Research, 114( 10), 478– 486. https://doi.org/10.1002/bdr2.2008
• Ashley S, Shilhan D, Battye M, Meyer C, Mancini M, Ayres B, Muneer A, Albersen M, Feitz W, Langenhuijsen JF, Sangar V. Clinical performance in ERN eUROGEN for penile, testicular, adrenal and soft tissue cancers. Eur J Surg Oncol. 2022 Mar;48(3):680-686. doi: 10.1016/j.ejso.2021.11.014. [*]

• Mancini M, Righetto M, Modonutti D, Morlacco A, Dal Moro F, Zattoni F; European Reference Network for Rare Urogenital Diseases Complex Conditions (ERN eUROGEN). Successful Treatment of Vesicovaginal Fistulas via an Abdominal Transvesical Approach: A Single-center 50-yr Experience. Eur Urol Focus. 2021 Nov;7(6):1485-1492. doi: 10.1016/j.euf.2020.06.017.
• Ashley S, Shanks JH, Oliveira P, Lucky M, Parnham A, Lau M, Sangar V. Human Papilloma Virus (HPV) status may impact treatment outcomes in patients with pre-cancerous penile lesions (an eUROGEN Study). Int J Impot Res. 2021 Sep;33(6):620-626. doi: 10.1038/s41443-020-0327-4.
• Sinatti C, Schechter MY, Spinoit AF, Hoebeke P. Long-term outcome of urethral and genital reconstruction in hypospadias and exstrophy-epispadias complex. Curr Opin Urol. 2021 Sep 1;31(5):480-485. doi: 10.1097/MOU.0000000000000920.
• Christodoulidou MM, Alnajjar MHM, Parnham MA, Khetrapal DP, Freeman DA, Haider DA, Mitra DAV, Bunker PCB, Muneer MA. Multidisciplinary Approach for the Management of Penoscrotal Extramammary Paget’s disease -An eUROGEN study. Urol Oncol. 2021 Jun 27:S1078-1439(21)00226-X. doi: 10.1016/j.urolonc.2021.05.018.
• Spinoit AF, Sinatti C, Lambert E, Pauwaert K, Verla W, Van Laecke E, Hoebeke P. How I do it: Buttonholing the preputial hood in hypospadias repair-related ventral skin shortage. J Pediatr Urol. 2021 Jun;17(3):332-334. doi: 10.1016/j.jpurol.2021.02.010.
• Schmiedeke E, Ohlms J, Faiss M, Stamatopoulos E, Schwarzer N, Widenmann-Grolig A, Aminoff D, Haanen M, Cavalieri D, Jenetzky E. Objective Professionals, Subjective Patients? Unbiased Thinking Facilitates Better, Multidimensional Treatment. Eur J Pediatr Surg. 2021 Jun 14. doi: 10.1055/s-0041-1729899.
• Roussel E, Peeters E, Vanthoor J, Bozzini G, Muneer A, Ayres B, Sri D, Watkin N, Bhattar R, Parnham A, Sangar V, Lau M, Joice G, Bivalacqua TJ, Chipollini J, Spiess PE, Hatzichristodoulou G, de Vries L, Brouwer O, Albersen M; eUROGEN, the Young Academic Urologists (YAU) Working Group of Men’s Health. Predictors of local recurrence and its impact on survival after glansectomy for penile cancer: time to challenge the dogma? BJU Int. 2021 May;127(5):606-613. doi: 10.1111/bju.15297. [*]
• Oomen L, de Wall LL, Cornelissen EAM, Feitz WFJ, Bootsma-Robroeks CMHHT. Prognostic Factors on Graft Function in Pediatric Kidney Recipients. Transplant Proc. 2021 Apr;53(3):889-896. doi: 10.1016/j.transproceed.2020.10.017.
• 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 AF. Pediatric Challenges in Robot-Assisted Kidney Transplantation. Front Surg. 2021 Mar 25;8:649418. doi: 10.3389/fsurg.2021.649418.  [*]
• Oomen L, Leijte E, Shilhan DE, Battye M, Members Of Ern eUROGEN, Feitz WFJ. Rare and Complex Urology: Clinical Overview of ERN eUROGEN. Eur Urol. 2021 Mar 18:S0302-2838(21)00170-6. doi: 10.1016/j.eururo.2021.02.043. [*]
• Sinatti C, Waterschoot M, Roth J, Van Laecke E, Hoebeke P, Spinoit AF. Long-term sexual outcomes in patients with exstrophy-epispadias complex. Int J Impot Res. 2021 Mar;33(2):164-169. doi: 10.1038/s41443-020-0248-2.
• Cakir OO, Castiglione F, Tandogdu Z, Collins J, Alnajjar HM, Akers C, Albersen M, Alifrangis C, Ayres B, Brouwer O, Cullen I, Hawkey P, Jakobsen JK, Johansen TEB, Kalejaiye O, Kaul A, Köves B, Kumar V, Mancini M, Mitra AV, Parnham A, Pozzi E, Protzel C, Sangar VK, Wagenlehner F, Muneer A. Management of penile cancer patients during the COVID-19 pandemic: An eUROGEN accelerated Delphi consensus study. Urol Oncol. 2021 Mar;39(3):197.e9-197.e17. doi: 10.1016/j.urolonc.2020.12.005. [*]
• Servais A, Thomas K, Dello Strologo L, Sayer JA, Bekri S, Bertholet-Thomas A, Bultitude M, Capolongo G, Cerkauskiene R, Daudon M, Doizi S, Gillion V, Gràcia-Garcia S, Halbritter J, Heidet L, van den Heijkant M, Lemoine S, Knebelmann B, Emma F, Levtchenko E; Metabolic Nephropathy Workgroup of the European Reference Network for Rare Kidney Diseases (ERKNet) and eUROGEN. Cystinuria: clinical practice recommendation. Kidney Int. 2021 Jan;99(1):48-58. doi: 10.1016/j.kint.2020.06.035. [*]

• Ryan G, Vyrostek S, Aminoff D, Booth K, Driesbach S, Fisher M, Gerberick J, Haanen M, Mullins C, Parker L, Schwarzer N. Importance of education and the role of the patient and family in the care of anorectal malformations. Semin Pediatr Surg. 2020 Dec;29(6):150990. doi: 10.1016/j.sempedsurg.2020.150990.
• Morlacco A, Mancini M, Soligo M, Zattoni F, Calpista A, Vizzielli G, Patti R, Mandato FG, Barneschi AC, Zattoni F, Iafrate M, Dal Moro F; European Reference Network for rare UROGENital disease and complex conditions (ERN eUROGEN). Relevance of the Endoscopic Evaluation in the Diagnosis of Bladder Pain Syndrome/Interstitial Cystitis. Urology. 2020 Oct;144:106-110. doi: 10.1016/j.urology.2020.06.032.
• Schmiedeke E, Aminoff D, Schwarzer N, Slater G, Power B, Widenmann-Grolig A, Feitz W, Wessel L, Wijnen R. Letter to the Editor concerning Schmedding et al.: Decentralised surgery of abdominal wall defects in Germany (Pediatr Surg Int (2020) 36:569-578). Pediatr Surg Int. 2020 Sep;36(9):1117-1119. doi: 10.1007/s00383-020-04717-w.
• Thomas A, Vanthoor J, Himmelreich U, Cawthorne C, Deroose CM, Gsell W, Spans L, Rizzotto L, Leucci E, Van Rompuy AS, Muneer A, Albersen M; European Reference Network for Rare Urogenital Diseases and Complex Conditions (eUROGEN). Establishment, Characterization, and Imaging of a First Platinum-resistant Penile Cancer Patient-derived Xenograft in Nude Mice: A eUROGEN Project. Eur Urol. 2020 Aug;78(2):294-296. doi: 10.1016/j.eururo.2020.05.033. [*]
• Ferong K, Waterschoot M, Sinatti C, Van Laecke E, Cools M, Hoebeke P, Spinoit AF. Rare and special robotic surgery indications in the pediatric population: ectopic organs and differences of sexual development. World J Urol. 2020 Aug;38(8):1865-1868. doi: 10.1007/s00345-019-02913-5.
• Mancini M, Leone N, Iafrate M, Fassina A, Zattoni F; in collaboration with European Reference Network for Rare Urogenital Diseases and Complex Conditions (ERN eUROGEN). Spontaneous intra-adrenal massive hematoma: possible extreme evolution of a non-secreting untreated adrenal adenoma. J Surg Case Rep. 2020 Jun 19;2020(6):rjaa185. doi: 10.1093/jscr/rjaa185.
• Vanthoor J, Thomas A, Tsaur I, Albersen M; and in collaboration with the European Reference Network for rare urogenital diseases and complex conditions (eUROGEN). Making surgery safer by centralization of care: impact of case load in penile cancer. World J Urol. 2020 Jun;38(6):1385-1390. doi: 10.1007/s00345-019-02866-9.
• Sinatti C, Wolff D, Buncamper M, Verla W, Claes K, Lumen N, Waterloos M, Monstrey S, Hoebeke P, Spinoit AF. Phalloplasty in biological men with penile insufficiency. J Pediatr Urol. 2020 Jun;16(3):404-405. doi: 10.1016/j.jpurol.2020.04.015.
• Thomas A, Vanthoor J, Vos G, Tsaur I, Albersen M, and in collaboration with the European Reference Network for rare urogenital diseases and complex conditions (eUROGEN). Risk factors and molecular characterization of penile cancer impact on prognosis and potential targets for systemic therapy. Curr Opin Urol. 2020 Mar;30(2):202-207. doi: 10.1097/MOU.0000000000000712.

• Cleaveland P, Lau M, Parnham A, Murby B, Ashworth D, Manohoran P, Taylor B, Bell J, Najran P, Oliveira P, Shanks J, Sangar V. Testing the Feasibility of SentiMag/Sienna+ for Detecting Inguinal Sentinel Nodes in Penile Cancer (SentiPen): An eUROGEN and National Cancer Research Institute Trial. Eur Urol. 2019 Dec;76(6):874-875. doi: 10.1016/j.eururo.2019.09.007.
• 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 JP; ANTENATAL Consortium. The ANTENATAL multicentre study to predict postnatal renal outcome in fetuses with posterior urethral valves: objectives and design. Clin Kidney J. 2019 Sep 26;13(3):371-379. doi: 10.1093/ckj/sfz107. [*]
• Schmiedeke E, Schaefer S, Aminoff D, Schwarzer N, Jenetzky E. Non-financial conflicts of interest: contribution to a surgical dilemma by the European Reference Networks for Rare Diseases. Pediatr Surg Int. 2019 Sep;35(9):999-1004. doi: 10.1007/s00383-019-04516-y.
• Khaw RA, Van Thoor J, Albersen M, Oliveira P, Elliott T, Sangar V, Lau M, Parnham A. Outcomes of penile cancer patients with micro-metastases in dynamic sentinel lymph node biopsy specimens: An eUROGEN collaboration. J Urol 2019; 201(s4)e1019. doi: 10.1097/01.JU.0000557086.30078.4f & Eur Urol Suppl 2019; 18(1);e645. doi: 10.1016/S1569-9056(19)30475-0. [*]
• Cleaveland P, Oliveira P, Hambrock T, Bell J, Najran P, Clarke N, Murby B, Parr N, Parnham A, Lau M, Sangar V. The SentiPen trial from eUROGEN & The NCRI (UK): Concordance of Sienna+/Sentimag with Standard 99mTc labeled nanocolliod technique for the detection of inguinal sentinel lymph nodes in patients with cN0 penile cancer. Eur Urol Suppl 2019; 18(1);e645e652. doi: 10.1016/S1569-9056(19)30481-6.
• Ashley S, Cleaveland P, Oliveira P, Clarke N, Parr N, Lucky M, Lau M, Parnham A, Sangar V. Treatment outcomes of penile intraepithelial neoplasia (PeIN) related to P16 status. Eur Urol Suppl 2019; 18(1)e647. doi: 10.1016/S1569-9056(19)30477-4.
• Albersen M, Spiess PE. Editorial: penile cancer. Curr Opin Urol. 2019 Mar;29(2):143-144. doi: 10.1097/MOU.0000000000000586.
• Vu Minh Arnell M, Abrahamsson K. Urinary continence appears to enhance social participation and intimate relations in adolescents with myelomeningocele. J Pediatr Urol. 2019 Feb;15(1):33.e1-33.e6. doi: 10.1016/j.jpurol.2018.08.008.