Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture

Authors: Abbo, Olivier, Angotti, Rossella, Antunovic, Sanja Sindjic, Anzelewicz, Stefan, Arneitz, Christoph, Arnold, Marion, Assi, Zaki, Aydin, Emrah, Ballouhey, Quentin, Barila, Patricia, Basson, Sonia, Besendorfer, Manuel, Di Cesare, Antonio, Dariel, Anne, Dekeryte, Inga, Djordjevic, Ivona, Domenichelli, Vincenzo, Duranteau, Lise, Durakbasa, Cigdem, Ebert, Anne-Karoline, Ellerkamp, Verena, Leon, Francesco Fascetti, Fisch, Margit, Vazquez, Araceli García, Gielok, Christoph, Bahadir, Gulnur Gollu, Haecker, Frank-Martin, Holmdahl, Gundela, Irtan, Sabine, Jones, Ceri, Kakar, Mohit, Keshtgar, Ali, Kvist, Kolja, Laconi, Francesco, Laurance, Marie, Candel, Eduardo Lopez, Ludwiczek, Johanna, Ludwikowski, Barbara, Macchini, Francesco, Malota, Mark, Matthyssens, Lucas, Martin, Benjamin, Martinez, Leopoldo, Midrio, Paola, Miserez, Marc, Mosiello, Giovanni, Pascual, Francisco Murcia, Nunez, Bernardo, Olén, Roger, Öztorun, Can İhsan, Parlak, Ayse, Prato, Alessio Pini, Poupalou, Anna, Arias, Marcos Prada, Prat, Jordi, Gil, Carlos Pueyo, Avila Ramirez, Luis Felipe, Reingruber, Bertram, Riccipetitoni, Giovanna, Riechardt, Silke, Risteski, Toni, Rogula, Wojciech, Rolle, Udo, Romeo, Carmelo, Schäfer, Frank-Mattias, Scirè, Gabriella, Sfeir, Rony, Singer, Georg, Sloots, Pim, Stanton, Michael, Stenström, Pernilla, Stockinger, Maria, Surhan, M., Suominen, Janne, Syed, Julia, Talon, Isabelle, Tanriverdi, Halil Ibrahim, Uzunlu, Osman, Valfre, Laura, Witvliet, Marieke, Zambaiti, Elisa, Zanatta, Cinzia, Zani, Augusto, de Beaufort, Cunera M.C., Aminoff, Dalia, de Blaauw, Ivo, Crétolle, Célia, Dingemann, Jens, Durkin, Natalie, Feitz, Wout F.J., Fruithof, JoAnne, Grano, Caterina, Burgos, Carmen Mesas, Schwarzer, Nicole, Slater, Graham, Soyer, Tutku, Violani, Cristiano, Wijnen, Rene, de Coppi, Paolo, Gorter, Ramon R.

Source: In Journal of Pediatric Surgery December 2023 58(12):2319-2326

A Quality Assessment of the ARM-Net Registry Design and Data Collection

Authors: Aminoff, Dalia, Amerstorfer, Eva, Till, Holger, Bagolan, Piero, Iacobelli, Barbara, Çavuşoğlu, Hakan, Ozen, Onur, Deluggi, Stefan, Ludwiczek, Johanna, Divarci, Emre, Fanjul, María, Fascetti-Leon, Francesco, Vázquez, Araceli García, Giné, Carlos, Gorter, Ramon, de Jong, Justin, Goseman, Jan, Lacher, Martin, Grano, Caterina, Grasshoff-Derr, Sabine, Haanen, Michel, Leva, Ernesto, Morandi, Anna, Lisi, Gabriele, Makedonsky, Igor, Marcelis, Carlo, Midrio, Paola, Miserez, Marc, Mohideen, Mazeena, PiniPrato, Alessio, Reck-Burneo, Carlos, Reutter, Heiko, Rohleder, Stephan, Samuk, Inbal, Schmiedeke, Eberhard, Schwarzer, Nicole, Sloots, Pim, Stenström, Pernilla, Verhaak, Chris, Vilanova-Sánchez, Alejandra, Volk, Patrick, Witvliet, Marieke, Hageman, Isabel C., van der Steeg, Hendrik J.J., Jenetzky, Ekkehart, Trajanovska, Misel, King, Sebastian K., de Blaauw, Ivo, van Rooij, Iris A.L.M.

Source: In Journal of Pediatric Surgery October 2023 58(10):1921-1928

Anorectal prolapse after anorectal reconstruction: Incidence and risk factors according to the ARM‐Net Consortium.

Authors: Stenström, Pernilla, Maestri, Francesca, Aminoff, Dalia, de Blaauw, Ivo, Ludwiczek, Johanna, Midrio, Paola, Prato, Alessio Pini, Vilanova‐Sanchez, Alejandra, Morandi, Anna, van Rooij, Iris

Source: Colorectal Disease; Feb2025, Vol. 27 Issue 2, p1-9, 9p

Subject Terms: RECTAL prolapse, DISEASE risk factors, DISEASE incidence, PEDIATRIC surgery, TREATMENT effectiveness, HUMAN abnormalities

European Reference Network eUROGEN Guidelines on the Management of Anorectal Malformations, Part II: Treatment.

Authors: Aubert, Ophelia, Irvine, Willemijn F. E., Aminoff, Dalia, de Blaauw, Ivo, Cascio, Salvatore, Cretolle, Célia, Iacobelli, Barbara Daniela, Mantzios, Konstantinos, Midrio, Paola, Miserez, Marc, Sarnacki, Sabine, Schmiedeke, Eberhard, Schwarzer, Nicole, Sloots, Cornelius, Stenström, Pernilla, Lacher, Martin, Gosemann, Jan-Hendrik

Source: European Journal of Pediatric Surgery; Apr2025, Vol. 35 Issue 2, p112-119, 8p

ERN eUROGEN Guidelines on the Management of Anorectal Malformations Part I: Diagnostics.

Authors: Aubert, Ophelia, Irvine, Willemijn F.E., Aminoff, Dalia, de Blaauw, Ivo, Cascio, Salvatore, Cretolle, Célia, Iacobelli, Barbara Daniela, Mantzios, Konstantinos, Midrio, Paola, Miserez, Marc, Sarnacki, Sabine, Schmiedeke, Eberhard, Schwarzer, Nicole, Sloots, Cornelius, Stenström, Pernilla, Lacher, Martin, Gosemann, Jan-Hendrik

Source: European Journal of Pediatric Surgery; Apr2025, Vol. 35 Issue 2, p104-111, 8p

ERN eUROGEN Guidelines on the Management of Anorectal Malformations Part III: Lifelong Follow-up and Transition of Care.

Authors: Aubert, Ophelia, Irvine, Willemijn F.E., Aminoff, Dalia, de Blaauw, Ivo, Cascio, Salvatore, Cretolle, Célia, Iacobelli, Barbara Daniela, Lacher, Martin, Mantzios, Konstantinos, Miserez, Marc, Sarnacki, Sabine, Schmiedeke, Eberhard, Schwarzer, Nicole, Sloots, Cornelius, Stenström, Pernilla, Midrio, Paola, Gosemann, Jan-Hendrik

Source: European Journal of Pediatric Surgery; Apr2025, Vol. 35 Issue 2, p120-127, 8p

ERN eUROGEN Guidelines on the Management of Anorectal Malformations, Part IV: Organization of Care and Communication between Providers.

Authors: Aubert, Ophelia, Irvine, Willemijn, Aminoff, Dalia, de Blaauw, Ivo, Cascio, Salvatore, Cretolle, Célia, Iacobelli, Barbara Daniela, Lacher, Martin, Mantzios, Konstantinos, Midrio, Paola, Miserez, Marc, Sarnacki, Sabine, Schmiedeke, Eberhard, Sloots, Cornelius, Stenström, Pernilla, Schwarzer, Nicole, Gosemann, Jan-Hendrik

Source: European Journal of Pediatric Surgery; Apr2025, Vol. 35 Issue 2, p128-134, 7p

Ongoing care for the patient with an anorectal malfromation; transitioning to adulthood

Authors: Gasior, Alessandra, Midrio, Paola, Aminoff, Dalia, Stanton, Michael

Source: In Seminars in Pediatric Surgery December 2020 29(6)

Importance of education and the role of the patient and family in the care of anorectal malformations

Authors: Ryan, Greg, Vyrostek, Stephanie, Aminoff, Dalia, Booth, Kristina, Driesbach, Sarah, Fisher, Meghan, Gerberick, Julie, Haanen, Michel, Mullins, Chelsea, Parker, Lori, Schwarzer, Nicole

Source: In Seminars in Pediatric Surgery December 2020 29(6)

Positive Orientation and Health-related Quality of Life in Adult Patients Born With Anorectal Malformations

Authors: Fernandes, Mariana, Aminoff, Dalia, Violani, Cristiano, Grano, Caterina

Source: Journal of pediatric gastroenterology and nutrition. 71(3):298-303

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100181773340.0x000001&indx=1&recIds=ETOCvdc_100181773340.0x000001

Sexual well-being in adolescent and young adults born with arm: the perspective of the patients

Authors: Eleuteri, Stefano, Aminoff, Dalia, Lucidi, Fabio, Violani, Cristiano, Grano, Caterina

Source: Pediatric surgery international. 35(9):945-951

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100128848084.0x000001&indx=1&recIds=ETOCvdc_100128848084.0x000001

Transition of care in patients with anorectal malformations: Consensus by the ARM-net consortium

Authors: Giuliani, Stefano, Grano, Caterina, Aminoff, Dalia, Schwarzer, Nicole, Van De Vorle, Mariette, Cretolle, Celia, Haanen, Michel, Brisighelli, Giulia, Marzheuser, Stefanie, Connor, Martin

Source: In Journal of Pediatric Surgery November 2017 52(11):1866-1872

Chapter 4 - The patient view on the ERN programme: Share, care, cure, and pathways

Authors: Aminoff, Dalia, Bartezzati, Rita Serena, Schwarzer, Nicole, Harkin, Claire, Tyler, Kate, Santis, Anna De, Osborne, John, Manzie, Kenneth, Cornes, Robert

Source: In Rare and Complex Urology 2024:31-38

Chapter 7 - Development of ERN eUROGEN clinical practice guidelines (CPGs) and clinical decision support tools (CDSTs)

Authors: Tidman, Jen, Feitz, Wouter F.J., Subramaniam, Ramnath, Aminoff, Dalia, Blasco-Amaro, Juan Antonio, Carmona-Hidalgo, Beatriz, González-Bermúdez, Lourdes, Martín-Gómez, Carmen, Stallings, Elena, Vicente-Edo, María José, Benavent, Patricia Gavín

Source: In Rare and Complex Urology 2024:59-67

Letter to the Editor concerning Schmedding et al.: Decentralised surgery of abdominal wall defects in Germany (Pediatr Surg Int (2020) 36:569–578)

Authors: Schmiedeke, Eberhard, Aminoff, Dalia, Schwarzer, Nicole, Slater, Graham, Power, Beverley, Widenmann-Grolig, Anke, Feitz, Wout, Wessel, Lucas, Wijnen, René

Source: Pediatric surgery international. 36(9):1117-1119

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100168081772.0x000001&indx=1&recIds=ETOCvdc_100168081772.0x000001

The European Anorectal Malformation Network (ARM-Net) patient registry: 10-year review of clinical and surgical characteristics.

Authors: Hageman, Isabel C, Midrio, Paola, van der Steeg, Hendrik J J, Jenetzky, Ekkehart, Iacobelli, Barbara D, Morandi, Anna, Sloots, Cornelius E J, Schmiedeke, Eberhard, Broens, Paul M A, Fascetti Leon, Francesco, Çavuşoğlu, Yusuf H, Gorter, Ramon R, Trajanovska, Misel, King, Sebastian K, Aminoff, Dalia, Schwarzer, Nicole, Haanen, Michel, de Blaauw, Ivo, van Rooij, Iris A L M, Amerstorfer, Eva

Source: British Journal of Surgery; Feb2024, Vol. 111 Issue 2, p1-8, 8p

Subject Terms: RECTAL prolapse, MEDICAL registries, HUMAN abnormalities, HIRSCHSPRUNG'S disease, ANORECTAL function tests, VENTRICULAR septal defects, REOPERATION, ILEOSTOMY

Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture.

Authors: de Beaufort, Cunera M.C., Aminoff, Dalia, de Blaauw, Ivo, Crétolle, Célia, Dingemann, Jens, Durkin, Natalie, Feitz, Wout F.J., Fruithof, JoAnne, Grano, Caterina, Burgos, Carmen Mesas, Schwarzer, Nicole, Slater, Graham, Soyer, Tutku, Violani, Cristiano, Wijnen, Rene, de Coppi, Paolo, Gorter, Ramon R.

Source: Journal of Pediatric Surgery; Dec2023, Vol. 58 Issue 12, p2319-2326, 8p

First results of a European multi-center registry of patients with anorectal malformations

Authors: de Blaauw, Ivo, Wijers, Charlotte H.W., Schmiedeke, Eberhard, Holland-Cunz, Stefan, Gamba, Piergiorgio, Marcelis, Carlo L.M., Reutter, Heiko, Aminoff, Dalia, Schipper, Muriel, Schwarzer, Nicole, Grasshoff-Derr, Sabine, Midrio, Paola, Jenetzky, Ekkehart, van Rooij, Iris A.L.M.

Source: In Journal of Pediatric Surgery December 2013 48(12):2530-2535

The Challenges of the European Anorectal Malformations-Net Registry

Authors: Jenetzky, Ekkehart, van Rooij, Iris, Aminoff, Dalia, Schwarzer, Nicole, Reutter, Heiko, Schmiedeke, Eberhard, Midrio, Paola, de Blaauw, Ivo

Source: European journal of pediatric surgery. 25(6):481-487

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100172918254.0x000001&indx=1&recIds=ETOCvdc_100172918254.0x000001

Long-term disease-specific quality of life in children and adolescent patients with ARM

Authors: Grano, Caterina, Aminoff, Dalia, Lucidi, Fabio, Violani, Cristiano

Source: In Journal of Pediatric Surgery July 2012 47(7):1317-1322