Non-invasive measurement of liver and pancreas fibrosis in patients with cystic fibrosis von Friedrich-Rust, Mireen, Schlueter, Nina, Smaczny, Christina, Eickmeier, Olaf, Rosewich, Martin, Feifel, Kirstin, Herrmann, Eva, Poynard, Thierry, Gleiber, Wolfgang, Lais, Christoph, Zielen, Stefan, Wagner, Thomas O.F, Zeuzem, Stefan, Bojunga, Joerg

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BIIL 284 reduces neutrophil numbers but increases P. aeruginosa bacteremia and inflammation in mouse lungs von Döring, Gerd, Bragonzi, Alessandra, Paroni, Moira, Aktürk, Firdevs-Fatma, Cigana, Cristina, Schmidt, Annika, Gilpin, Deirdre, Heyder, Susanne, Born, Torsten, Smaczny, Christina, Kohlhäufl, Martin, Wagner, Thomas O.F, Loebinger, Michael R, Bilton, Diana, Tunney, Michael M, Elborn, J. Stuart, Pier, Gerald B, Konstan, Michael W, Ulrich, Martina

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ECFS best practice guidelines: the 2018 revision von Castellani, Carlo, Duff, Alistair J.A., Bell, Scott C., Heijerman, Harry G.M., Munck, Anne, Ratjen, Felix, Sermet-Gaudelus, Isabelle, Southern, Kevin W., Barben, Jurg, Flume, Patrick A., Hodková, Pavla, Kashirskaya, Nataliya, Kirszenbaum, Maya N., Madge, Sue, Oxley, Helen, Plant, Barry, Schwarzenberg, Sarah Jane, Smyth, Alan R., Taccetti, Giovanni, Wagner, Thomas O.F., Wolfe, Susan P., Drevinek, Pavel

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Outpatient medication costs of patients with cystic fibrosis in Germany von Eidt-Koch, Daniela, Wagner, Thomas O. F., Mittendorf, Thomas, von der Schulenburg, J.-Matthias Graf

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Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis von Elborn, J Stuart, Bell, Scott C, Madge, Susan L, Burgel, Pierre-Regis, Castellani, Carlo, Conway, Steven, De Rijcke, Karleen, Dembski, Birgit, Drevinek, Pavel, Heijerman, Harry G M, Innes, J Alistair, Lindblad, Anders, Marshall, Bruce, Olesen, Hanne V, Reimann, Andreas L, Solé, Ampara, Viviani, Laura, Wagner, Thomas O F, Welte, Tobias, Blasi, Francesco

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How to design a registry for undiagnosed patients in the framework of rare disease diagnosis: suggestions on software, data set and coding system von Berger, Alexandra, Rustemeier, Anne-Kathrin, Goebel, Jens, Kadioglu, Dennis, Britz, Vanessa, Schubert, Katharina, Mohnike, Klaus, Storf, Holger, Wagner, Thomas O. F.

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Serum Leptin and Cytokines in Whole Blood in Relation to Clinical and Nutritional Status in Cystic Fibrosis von Schmitt‐Grohé, Sabina, Hippe, Valerie, Igel, Michael, Bergmann, Klaus, Posselt, Hans G., Krahl, Andreas, Smaczny, Christina, Wagner, Thomas O.F., Nikolaizik, Wilfried, Lentze, Michael J., Zielen, Stefan

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OSSE – open source registry software solution von Muscholl, Marita, Lablans, Martin, Wagner, Thomas OF, Ãckert, Frank

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Telephone health services in the field of rare diseases: a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany von Babac, Ana, Frank, Martin, Pauer, Frédéric, Litzkendorf, Svenja, Rosenfeldt, Daniel, Lührs, Verena, Biehl, Lisa, Hartz, Tobias, Storf, Holger, Schauer, Franziska, Wagner, Thomas O F, Graf von der Schulenburg, J-Matthias

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Impact of a Gap Junction Protein Alpha 4 Variant on Clinical Disease Phenotype in F508del Homozygous Patients With Cystic Fibrosis von Horn, Tabea, Ludwig, Michael, Eickmeier, Olaf, Neerinex, Anne H., van der Zee, Anke H., Smaczny, Christina, Wagner, Thomas O. F., Schubert, Ralf, Zielen, Stefan, Majoor, Christof, Bos, Lieuwe D., Schmitt-Grohe, Sabina

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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 von Hebestreit, Helge, Zeidler, Cornelia, Schippers, Christopher, de Zwaan, Martina, Deckert, Jürgen, Heuschmann, Peter, Krauth, Christian, Bullinger, Monika, Berger, Alexandra, Berneburg, Mark, Brandstetter, Lilly, Deibele, Anna, Dieris-Hirche, Jan, Graessner, Holm, Gündel, Harald, Herpertz, Stephan, Heuft, Gereon, Lapstich, Anne-Marie, Lücke, Thomas, Maisch, Tim, Mundlos, Christine, Petermann-Meyer, Andrea, Müller, Susanne, Ott, Stephan, Pfister, Lisa, Quitmann, Julia, Romanos, Marcel, Rutsch, Frank, Schaubert, Kristina, Schubert, Katharina, Schulz, Jörg B, Schweiger, Susann, Tüscher, Oliver, Ungethüm, Kathrin, Wagner, Thomas O F, Haas, Kirsten

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Effect of the addition of a mental health specialist for evaluation of undiagnosed patients in centres for rare diseases (ZSE-DUO): a prospective, controlled trial with a two-phase... von Hebestreit, Helge, Lapstich, Anne-Marie, Brandstetter, Lilly, Krauth, Christian, Deckert, Jürgen, Haas, Kirsten, Schippers, Christopher, Dieris-Hirche, Jan, Tüscher, Oliver, Bârlescu, Lavinia, Berger, Alexandra, Berneburg, Mark, Britz, Vanessa, Deibele, Anna, Graeßner, Holm, Gündel, Harald, Heuft, Gereon, Lücke, Thomas, Rutsch, Frank, Schulz, Jörg Bernhard, Schweiger, Susann, Zeidler, Cornelia, Zeltner, Lena, de Zwaan, Martina, Akkaya, Federica, Babka, Christine, Bannert, Lisa, Bärsch-Michelmann, Anja, Böhm, Leonie, Bullinger, Monika, Cario, Holger, de Greck, Moritz, Debatin, Klaus-Michael, Dillmann-Jehn, Katrin, Eymann, Jutta, Gödecke, Vega, Grasemann, Corinna, Haas, Astrid, Haisch, Lea, Isabell, Heinrich, Hennermann, Julia, Herrmann-Werner, Anne, Hett, Julian, Heuschmann, Peter, Holthöfer, Laura, Imhof, Christiane, Junne, Florian, Kassubek, Jan, Krassort, Heike, Kuhn, Julia, Latzko, Philipp, Loew, Thomas, Ludolph, Albert C., Meyer dos Santos, Isabell, Mohnike, Klaus, Monninger, Martina, Mücke, Martin, Müller, Susanne, Musacchio, Thomas, Nöhre, Mariel, Ott, Stephan, Petermann-Meyer, Andrea, Pfeifer-Duck, Christina, Piduhn, Lea-Sophie, Schaubert, Kristina, Schmidt, Annika, Schneider, Simone, Schoels, Ludger, Schwalba, Martina, Selig, Udo, Stösser, Sebastian, Vogel, Matthias, Volk, Daniela, Vollmuth, Christoph, Volnov, Solange, Wagner, Thomas O.F., Warrings, Bodo, Zajt, Kamil, Zenker, Karola, Zhang, David, Zipfel, Stephan, Hebestreit, Helge, Brandstetter, Lilly, Haas, Kirsten, Schippers, Christopher, Dieris-Hirche, Jan, Bârlescu, Lavinia Aurelia, Berger, Alexandra, Berneburg, Mark, Britz, Vanessa, Deibele, Anna, Heuft, Gereon, Lücke, Thomas, Mundlos, Christine, Quitmann, Julia Hannah, Schubert, Katharina, Schulz, Jörg B., Zeltner, Lena Margarete, de Zwaan, Martina

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Reverse Transcription-Competitive Multiplex PCR Improves Quantification of mRNA in Clinical Samples—Application to the Low Abundance CFTR mRNA von Loitsch, Stefan M, Kippenberger, Stefan, Dauletbaev, Nurlan, Wagner, Thomas O.F, Bargon, Joachim

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Effect of the addition of a mental health specialist for evaluation of undiagnosed patients in centres for rare diseases (ZSE-DUO): a prospective, controlled trial with a two-phase... von Helge Hebestreit, Anne-Marie Lapstich, Lilly Brandstetter, Christian Krauth, Jürgen Deckert, Kirsten Haas, Lisa Pfister, Stefanie Witt, Christopher Schippers, Jan Dieris-Hirche, Tim Maisch, Oliver Tüscher, Lavinia Bârlescu, Alexandra Berger, Mark Berneburg, Vanessa Britz, Anna Deibele, Holm Graeßner, Harald Gündel, Gereon Heuft, Thomas Lücke, Christine Mundlos, Julia Quitmann, Frank Rutsch, Katharina Schubert, Jörg Bernhard Schulz, Susann Schweiger, Cornelia Zeidler, Lena Zeltner, Martina de Zwaan, Federica Akkaya, Christine Babka, Lisa Bannert, Anja Bärsch-Michelmann, Leonie Böhm, Folke Brinkmann, Monika Bullinger, Holger Cario, Moritz de Greck, Klaus-Michael Debatin, Katrin Dillmann-Jehn, Jutta Eymann, Julia Frisch, Anja Glode, Vega Gödecke, Corinna Grasemann, Eva Grauer, Astrid Haas, Lea Haisch, Isabell, Heinrich, Melissa Held, Julia Hennermann, Stephan Herpertz, Anne Herrmann-Werner, Julian Hett, Peter Heuschmann, Bettina Hilbig, Laura Holthöfer, Christiane Imhof, Florian Junne, Jan Kassubek, Kevin-Thomas Koschitzki, Heike Krassort, Birgit Kropff, Julia Kuhn, Philipp Latzko, Thomas Loew, Albert C. Ludolph, Torsten Meyer, Isabell Meyer dos Santos, Klaus Mohnike, Martina Monninger, Martin Mücke, Susanne Müller, Thomas Musacchio, Margret Nießen, Mariel Nöhre, Stephan Ott, Andrea Petermann-Meyer, Christina Pfeifer-Duck, Lea-Sophie Piduhn, Carina Rampp, Olaf Rieß, Kristina Schaubert, Annika Schmidt, Simone Schneider, Ludger Schoels, Martina Schwalba, Udo Selig, Alexandra Sroka, Toni Steinbüchel, Sebastian Stösser, Steffi Suchant, Kathrin Ungethüm, Matthias Vogel, Daniela Volk, Christoph Vollmuth, Solange Volnov, Thomas O.F. Wagner

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Europäische Referenznetzwerke: Konsequenzen für die Gesundheitsversorgung in Deutschland von Graessner, Holm, Schäfer, Franz, Scarpa, Maurizio, Wagner, Thomas O. F.

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Register für seltene Erkrankungen: OSSE – ein Open-Source-Framework für die technische Umsetzung von Storf, Holger, Schaaf, Jannik, Kadioglu, Dennis, Göbel, Jens, Wagner, Thomas O. F., Ückert, Frank

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Patientenregister für Seltene Erkrankungen in Deutschland: Konzeptpapier der Strategiegruppe „Register“ des Nationalen Aktionsbündnisses für Menschen mit Seltenen Erkrankungen (NAM... von Storf, Holger, Stausberg, Jürgen, Kindle, Gerhard, Quadder, Bernd, Schlangen, Miriam, Walter, Maggie C., Ückert, Frank, Wagner, Thomas O. F.

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se-atlas – Versorgungsatlas für Menschen mit seltenen Erkrankungen: Unterstützung bei der Recherche nach Versorgungseinrichtungen und Selbsthilfeorganisationen von Haase, Johanna, Wagner, Thomas O. F., Storf, Holger

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Quality assessment of expert answers to lay questions about cystic fibrosis from various language zones in Europe: the ECORN-CF project von d'Alquen, Daniela, De Boeck, Kris, Bradley, Judy, Vávrová, Věra, Dembski, Birgit, Wagner, Thomas O F, Pfalz, Annette, Hebestreit, Helge

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A Compartmental Model for Alveolar Clearance of Pertechnegas von Kotzerke, Jorg, van den Hoff, Jorg, Burchert, Wolfgang, Wagner, Thomas O.F, Emter, Matthias, Hundeshagen, Heinz

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