Search Results - "Wagner, Thomas O F"

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

“…About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the…”
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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 by 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

“…Rare diseases are, by definition, very serious and chronic diseases with a high negative impact on quality of life. Approximately 350 million people worldwide…”
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Impact of a Gap Junction Protein Alpha 4 Variant on Clinical Disease Phenotype in F508del Homozygous Patients With Cystic Fibrosis by Horn, Tabea, Ludwig, Michael, Eickmeier, Olaf, Neerinex, Anne H, Maitland-van der Zee, Anke H, Smaczny, Christina, Wagner, Thomas O F, Schubert, Ralf, Zielen, Stefan, Majoor, Christof, Bos, Lieuwe D, Schmitt-Grohé, Sabina

“…Lung disease phenotype varies widely even in the (homozygous) genotype. Leukocyte-driven inflammation is important for pulmonary disease pathogenesis in cystic…”
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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 by d'Alquen, Daniela, De Boeck, Kris, Bradley, Judy, Vávrová, Věra, Dembski, Birgit, Wagner, Thomas O F, Pfalz, Annette, Hebestreit, Helge

“…The European Centres of Reference Network for Cystic Fibrosis (ECORN-CF) established an Internet forum which provides the opportunity for CF patients and other…”
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ECFS best practice guidelines: the 2018 revision by 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

“…Developments in managing CF continue to drive dramatic improvements in survival. As newborn screening rolls-out across Europe, CF centres are increasingly…”
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Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis by 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

“…The improved survival in people with cystic fibrosis has led to an increasing number of patients reaching adulthood. This trend is likely to be maintained over…”
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Resource usage in outpatient care and reimbursement for cystic fibrosis in Germany by Eidt-Koch, Daniela, Wagner, Thomas O.F., Mittendorf, Thomas, Reimann, Andreas, von der Schulenburg, J.-Matthias

“…Objective Objective of this study is to assess and evaluate resource use in outpatient treatment in Germany and to compare it with remuneration. Methods…”
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Pareto-principle in rare disease education: assessing the representation of common rare diseases in medical education and coding systems by Berger, Alexandra, Grimm, Kai Lars, Noll, Richard, Wagner, Thomas Of

“…The Pareto Principle asserts that a large portion of results can be achieved with a small amount of effort. Wakap et al. found that around 80% of individuals…”
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Non-invasive measurement of liver and pancreas fibrosis in patients with cystic fibrosis by 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

“…Abstract Background Patients with cystic fibrosis (CF) have a relevant morbidity and mortality caused by CF-related liver-disease. While transient elastography…”
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European Reference Networks : Consequences for healthcare in Germany by Graessner, Holm, Schäfer, Franz, Scarpa, Maurizio, Wagner, Thomas O F

“…Starting in 2017, European Reference Networks (ERNs) for rare disease patients will be established in the European Union. ERNs will pool expertise in clinical…”
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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 by Haase, Johanna, Wagner, Thomas O F, Storf, Holger

“…se-atlas - the health service information platform for rare diseases - is part of the German National Action Plan for People with Rare Diseases and is funded…”
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Serum Leptin and Cytokines in Whole Blood in Relation to Clinical and Nutritional Status in Cystic Fibrosis by 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

“…ABSTRACT Objectives: Leptin plays an important role in the energy balance and may be affected by hormonal and metabolic derangement associated with chronic…”
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Patient registries for rare diseases in Germany: concept paper of the NAMSE strategy group by Storf, Holger, Stausberg, Jürgen, Kindle, Gerhard, Quadder, Bernd, Schlangen, Miriam, Walter, Maggie C, Ückert, Frank, Wagner, Thomas O F

“…The National Action Plan for People with Rare Diseases contains 52 concrete actions, including in the fields of care, research, diagnosis, and information…”
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Registries for rare diseases : OSSE - An open-source framework for technical implementation by Storf, Holger, Schaaf, Jannik, Kadioglu, Dennis, Göbel, Jens, Wagner, Thomas O F, Ückert, Frank

“…Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the…”
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Mapping of Health Care Providers for People with Rare Diseases - From Vision to Implementation by Schaefer, Johanna, Tegtbauer, Niels, Pfeiffer, Wulf, Wagner, Thomas O F, Storf, Holger

“…se-atlas - the health service information platform for rare diseases - is part of the German National Action Plan for People with Rare Diseases. The website…”
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BIIL 284 reduces neutrophil numbers but increases P. aeruginosa bacteremia and inflammation in mouse lungs by 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

“…Abstract Background A clinical study to investigate the leukotriene B4 (LTB4 )-receptor antagonist BIIL 284 in cystic fibrosis (CF) patients was prematurely…”
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Outpatient medication costs of patients with cystic fibrosis in Germany by Eidt-Koch, Daniela, Wagner, Thomas O. F., Mittendorf, Thomas, von der Schulenburg, J.-Matthias Graf

“…Background Cystic fibrosis (CF) patients need specialized long-term treatment. In order to support lung function, pharmaceuticals such as broncho-dilators,…”
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Antioxidant properties of cystic fibrosis sputum by Dauletbaev, Nurlan, Rickmann, Jens, Viel, Klaus, Diegel, Holger, von Mallinckrodt, Christian, Stein, Jürgen, Wagner, Thomas O F, Bargon, Joachim

“…Oxidative stress is a likely contributor to the pathogenesis of cystic fibrosis (CF) lung disease. However, hydrogen peroxide (H(2)O(2)), a physiological…”
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Finding the Needle in the Hay Stack: An Open Architecture to Support Diagnosis of Undiagnosed Patients by Schaaf, Jannik, Boeker, Martin, Ganslandt, Thomas, Haverkamp, Christian, Hermann, Tim, Kadioglu, Dennis, Prokosch, Hans-Ulrich, Wagner, Thomas O F, von Wagner, Michael, Schaefer, Johanna, Sedlmayr, Martin, Storf, Holger

“…Clinical Decision Support Systems (CDSS) are promising to support physicians in finding the right diagnosis of patients with rare diseases (RD). The MIRACUM…”
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se-atlas – Versorgungsatlas für Menschen mit seltenen Erkrankungen: Unterstützung bei der Recherche nach Versorgungseinrichtungen und Selbsthilfeorganisationen by Haase, Johanna, Wagner, Thomas O. F., Storf, Holger

“…Zusammenfassung Der se-atlas – medizinischer Versorgungsatlas für seltene Erkrankungen – wird im Rahmen des Nationalen Aktionsplans für Menschen mit Seltenen…”
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