Not logged in Factors of family impact in a Swedish-German cohort of children born with esophageal atresia Dellenmark-Blom, Michaela; Abrahamsson, Kate; Dingemann, Jens; Witt, Stefanie; Dingemann, Carmen; Jonsson, Linus; Gatzinsky, Vladimir; Bullinger, Monika; Ure, Benno M.; Chaplin, John E.; Quitmann, Julia H. Share Save
Dual guidance structure for evaluation of patients with unclear diagnosis in centers for rare diseases (ZSE-DUO): study protocol for a controlled multi-center cohort study Hebestreit, Helge; Zeidler, Cornelia; Schippers, Christopher; de Zwaan, Martina; Deckert, Juergen; Heuschmann, Peter; Krauth, Christian; Bullinger, Monika; Berger, Alexandra; Berneburg, Mark; Brandstetter, Lilly; Deibele, Anna; Dieris-Hirche, Jan; Graessner, Holm; Guendel, Harald; Herpertz, Stephan; Heuft, Gereon; Lapstich, Anne-Marie; Luecke, Thomas; Maisch, Tim; Mundlos, Christine; Petermann-Meyer, Andrea; Mueller, Susanne; Ott, Stephan; Pfister, Lisa; Quitmann, Julia; Romanos, Marcel; Rutsch, Frank; Schaubert, Kristina; Schubert, Katharina; Schulz, Joerg B.; Schweiger, Susann; Tuescher, Oliver; Ungethuem, Kathrin; Wagner, Thomas O. F.; Haas, Kirsten Share Save
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Quality of life and mental health in children and adolescents during the first year of the COVID-19 pandemic: results of a two-wave nationwide population-based study Ravens-Sieberer, Ulrike; Kaman, Anne; Erhart, Michael; Otto, Christiane; Devine, Janine; Loeffler, Constanze; Hurrelmann, Klaus; Bullinger, Monika; Barkmann, Claus; Siegel, Nico A.; Simon, Anja M.; Wieler, Lothar H.; Schlack, Robert; Hoelling, Heike Share Save
Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study Witt, Stefanie; Dellenmark-Blom, Michaela; Kuckuck, Susanne; Dingemann, Jens; Abrahamsson, Kate; Dingemann, Carmen; Chaplin, John Eric; Ure, Benno; Bullinger, Monika; Gatzinsky, Vladimir; Joensson, Linus; Quitmann, Julia Hannah Share Save
Evaluation of two family-based intervention programs for children affected by rare disease and their families - research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design Boettcher, Johannes; Filter, Bonnie; Denecke, Jonas; Hot, Amra; Daubmann, Anne; Zapf, Antonia; Wegscheider, Karl; Zeidler, Jan; von der Schulenburg, J-Matthias Graf; Bullinger, Monika; Rassenhofer, Miriam; Schulte-Markwort, Michael; Wiegand-Grefe, Silke Share Save
Informed consent procedures in patients with an acute inability to provide informed consent: Policy and practice in the CENTER-TBI study van Wijk, Roel P. J.; van Dijck, Jeroen T. J. M.; Timmers, Marjolein; van Veen, Ernest; Citerio, Giuseppe; Lingsma, Hester F.; Maas, Andrew I. R.; Menon, David K.; Peul, Wilco C.; Stocchetti, Nino; Kompanje, Erwin J. O.; Akerlund, Cecilia; Amrein, Krisztina; Andelic, Nada; Andreassen, Lasse; Anke, Audny; Antoni, Anna; Audibert, Gerard; Azouvi, Philippe; Azzolini, Maria Luisa; Bartels, Ronald; Barzo, Pal; Beauvais, Romuald; Beer, Ronny; Bellander, Bo-Michael; Belli, Antonio; Benali, Habib; Berardino, Maurizio; Beretta, Luigi; Blaabjerg, Morten; Bragge, Peter; Brazinova, Alexandra; Brinck, Vibeke; Brooker, Joanne; Brorsson, Camilla; Buki, Andras; Bullinger, Monika; Cabeleira, Manuel; Caccioppola, Alessio; Calappi, Emiliana; Calvi, Maria Rosa; Cameron, Peter; Lozano, Guillermo Carbayo; Carbonara, Marco; Cavallo, Simona; Chevallard, Giorgio; Chieregato, Arturo; Ceyisakar, Iris; Coburn, Mark; Coles, Jonathan; Cooper, Jamie D.; Correia, Marta; Covic, Amra; Curry, Nicola; Czeiter, Endre; Czosnyka, Marek; Dahyot-Fizelier, Claire; Dark, Paul; Dawes, Helen; De Keyser, Veronique; Degos, Vincent; Della Corte, Francesco; den Boogert, Hugo; Depreitere, Bart; Dilvesi, Dula; Dixit, Abhishek; Donoghue, Emma; Dreier, Jens; Duliere, Guy-Loup; Ercole, Ari; Esser, Patrick; Ezer, Erzsebet; Fabricius, Martin; Feigin, Valery L.; Foks, Kelly; Frisvold, Shirin; Furmanov, Alex; Gagliardo, Pablo; Galanaud, Damien; Gantner, Dashiell; Gao, Guoyi; George, Pradeep; Ghuysen, Alexandre; Giga, Lelde; Glocker, Ben; Golubovic, Jagos; Gomez, Pedro A.; Gratz, Johannes; Gravesteijn, Benjamin; Grossi, Francesca; Gruen, Russell L.; Gupta, Deepak; Haagsma, Juanita A.; Haitsma, Iain; Helbok, Raimund; Helseth, Eirik; Horton, Lindsay; Huijben, Jilske; Hutchinson, Peter J.; Jacobs, Bram; Jankowski, Stefan; Jarrett, Mike; Jiang, Ji-Yao; Johnson, Faye; Jones, Kelly; Karan, Mladen; Kolias, Angelos G.; Kompanje, Erwin; Kondziella, Daniel; Koraropoulos, Evgenios; Koskinen, Lars-Owe; Kovacs, Noemi; Kowark, Ana; Lagares, Alfonso; Lanyon, Linda; Laureys, Steven; Lecky, Fiona; Ledoux, Didier; Lefering, Rolf; Legrand, Valerie; Lejeune, Aurelie; Levi, Leon; Lightfoot, Roger; Lingsma, Hester; Castano-Leon, Ana M.; Maegele, Marc; Majdan, Marek; Manara, Alex; Manley, Geoffrey; Martino, Costanza; Marechal, Hugues; Mattern, Julia; McMahon, Catherine; Melegh, Bela; Menon, David; Menovsky, Tomas; Misset, Benoit; Mulazzi, Davide; Muraleedharan, Visakh; Murray, Lynnette; Negru, Ancuta; Nelson, David; Newcombe, Virginia; Nieboer, Daan; Nyiradi, Jozsef; Olubukola, Otesile; Oresic, Matej; Ortolano, Fabrizio; Palotie, Aarno; Parizel, Paul M.; Payen, Jean-Francois; Perera, Natascha; Perlbarg, Vincent; Persona, Paolo; Peul, Wilco; Piippo-Karjalainen, Anna; Pirinen, Matti; Ples, Horia; Polinder, Suzanne; Pomposo, Inigo; Posti, Jussi P.; Puybasset, Louis; Radoi, Andreea; Ragauskas, Arminas; Raj, Rahul; Rambadagalla, Malinka; Rhodes, Jonathan; Richardson, Sylvia; Richter, Sophie; Ripatti, Samuli; Rocka, Saulius; Roe, Cecilie; Roise, Olav; Rosand, Jonathan; Rosenfeld, Jeffrey, V; Rosenlund, Christina; Rosenthal, Guy; Rossaint, Rolf; Rossi, Sandra; Rueckert, Daniel; Rusnak, Martin; Sahuquillo, Juan; Sakowitz, Oliver; Sanchez-Porras, Renan; Sandor, Janos; Schaefer, Nadine; Schmidt, Silke; Schoechl, Herbert; Schoonman, Guus; Schou, Rico Frederik; Schwendenwein, Elisabeth; Sewalt, Charlie; Skandsen, Toril; Smielewski, Peter; Sorinola, Abayomi; Stamatakis, Emmanuel; Stanworth, Simon; Stevens, Robert; Stewart, William; Steyerberg, Ewout W.; Sundstrom, Nina; Synnot, Anneliese; Takala, Riikka; Tamas, Viktoria; Tamosuitis, Tomas; Taylor, Mark Steven; Te Ao, Braden; Tenovuo, Olli; Theadom, Alice; Thomas, Matt; Tibboel, Dick; Tolias, Christos; Trapani, Tony; Tudora, Cristina Maria; Vajkoczy, Peter; Vallance, Shirley; Valeinis, Egils; Vamos, Zoltan; Van der Steen, Gregory; van der Naalt, Joukje; van Essen, Thomas A.; Van Hecke, Wim; van Heugten, Caroline; Van Praag, Dominique; Vande Vyvere, Thijs; Vargiolu, Alessia; Vega, Emmanuel; Velt, Kimberley; Verheyden, Jan; Vespa, Paul M.; Vik, Anne; Vilcinis, Rimantas; Volovici, Victor; von Steinbuchel, Nicole; Voormolen, Daphne; Vulekovic, Petar; Wang, Kevin K. W.; Wiegers, Eveline; Williams, Guy; Wilson, Lindsay; Winzeck, Stefan; Wolf, Stefan; Yang, Zhihui; Ylen, Peter; Younsi, Alexander; Zeiler, Frederick A.; Zelinkova, Veronika; Ziverte, Agate; Zoerle, Tommaso Share Save
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A DELPHI study on aspects of study design to overcome knowledge gaps on the burden of disease caused by serogroup B invasive meningococcal disease Marten, Ole; Koerber, Florian; Bloom, David; Bullinger, Monika; Buysse, Corinne; Christensen, Hannah; De Wals, Philippe; Dohna-Schwake, Christian; Henneke, Philipp; Kirchner, Markus; Knuf, Markus; Lawrenz, Burkhard; Monteiro, Andrea L.; Sevilla, Joseph Patrick; Van de Velde, Nicolas; Welte, Robert; Wright, Claire; Greiner, Wolfgang Share Save
Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia Bloemeke, Janika; Sommer, Rachel; Witt, Stefanie; Bullinger, Monika; Nordon, Clementine; Badia, Francisco Javier; Luna Gonzalez, Felipe; Leiva-Gea, Antonio; Delgado Rufino, Francisco de Borja; Mayoral-Cleries, Fermin; Romero-Sanchiz, Pablo; Clamagirand Saiz, Veronica; Nogueira-Arjona, Raquel; Mohnike, Klaus; Quitmann, Julia Share Save
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