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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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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Rare respiratory diseases are ready for primetime: from Rare Disease Day to the European Reference Networks von Humbert, Marc, Wagner, Thomas O

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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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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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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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Pareto-principle in rare disease education: assessing the representation of common rare diseases in medical education and coding systems von Berger, Alexandra, Grimm, Kai Lars, Noll, Richard, Wagner, Thomas Of

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se-atlas - the health service information platform for people with rare diseases : Supporting research on medical care institutions and support groups von Haase, Johanna, Wagner, Thomas O F, Storf, Holger

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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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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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Antioxidant properties of cystic fibrosis sputum von Dauletbaev, Nurlan, Rickmann, Jens, Viel, Klaus, Diegel, Holger, von Mallinckrodt, Christian, Stein, Jurgen, Wagner, Thomas O. F, Bargon, Joachim

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Ultrasound evaluation of mediastinal lymphadenopathy in patients with sarcoidosis von Hirche, Tim O, Hirche, Herbert, Cui, Xin-Wu, Wagner, Thomas O, Dietrich, Christoph 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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Increased frequency of regulatory T Cells and selection of highly potent CD62L+ cells during treatment of human lung transplant recipients with rapamycin von Lange, Christian M., Tran, Thuy Yen Vy, Farnik, Harald, Jungblut, Sven, Born, Torsten, Wagner, Thomas O., Hirche, Tim O.

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Sonographic Findings of the Hepatobiliary-Pancreatic System in Adult Patients With Cystic Fibrosis von Dietrich, Christoph F, Chichakli, Maruan, Hirche, Tim O, Bargon, Joachim, Leitzmann, Peter, Wagner, Thomas O, Lembcke, Bernhard

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Interleukin-8 in whole blood and clinical status in cystic fibrosis von Schmitt-Grohé, Sabina, Naujoks, Christian, Bargon, Joachim, Wagner, Thomas O., Schubert, Ralf, Hippe, Valerie, Zielen, Stefan

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Lipopolysaccharide binding protein, cytokine production in whole blood, and lipoproteins in cystic fibrosis von SCHMITT-GROHE, Sabina, HIPPE, Valerie, LENTZE, Michael J, ZIELEN, Stefan, IGEL, Michael, VON BERGMANN, Karl, POSSELT, Heinz G, KRAHL, Andreas, SMACZNY, Christina, WAGNER, Thomas O. F, NIKOLAZIK, Wilfried, SCHUBERT, Ralf

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TNF-alpha promoter polymorphism in relation to TNF-alpha production and clinical status in cystic fibrosis von Schmitt-Grohé, Sabina, Stüber, Frank, Book, Malte, Bargon, Joachim, Wagner, Thomas O, Naujoks, Christian, Schubert, Ralf, Lentze, Michael J, Zielen, Stefan

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Psychological Stress and Sky Diving—Authors’ Responsec von Schedlowski, Manfred, Wagner, Thomas O. F

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

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