Scientific Publications

Scientific Publications

In collaboration with the experts in our network, we have had numerous papers published in peer-reviewed academic and scientific journals. Publications are grouped below according to their publication date. Those marked with [*] represent publications involving at least two ERN eUROGEN members from at least two different EU/EEA Member States.

Information for clinicians/researchers in our network: 

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.


  • 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. [*]
  • 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. [*]
  • 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.
  • 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.
  • 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. [*]
  • 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.