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1. Expression of the tumor antigens NY-ESO-1, tyrosinase, MAGE-A3, and TPTE in pediatric and adult melanoma: a retrospective case control study

Author

Forchhammer, Stephan, Pop, Oltin Tiberiu, Hahn, Matthias, Aebischer, Valentin, Seitz, Christian M., Schroeder, Christopher, Liebmann, Alexandra, Abele, Michael, Wild, Hannah, Bien, Ewa, Kunc, Michal, Schneider, Dominik T., Cuk, Katarina, Büttel, Isabel, Flemmig, Carina, Peters, Magdalena, Laible, Mark, Brück, Patrick, Türeci, Özlem, Sahin, Ugur, Flatz, Lukas, and Brecht, Ines B.

Published
2024
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3. Clinical trio genome sequencing facilitates the interpretation of variants in cancer predisposition genes in paediatric tumour patients

Author

Schroeder, Christopher, Faust, Ulrike, Krauße, Luisa, Liebmann, Alexandra, Abele, Michael, Demidov, German, Schütz, Leon, Kelemen, Olga, Pohle, Alexandra, Gauß, Silja, Sturm, Marc, Roggia, Cristiana, Streiter, Monika, Buchert, Rebecca, Armenau-Ebinger, Sorin, Nann, Dominik, Beschorner, Rudi, Handgretinger, Rupert, Ebinger, Martin, Lang, Peter, Holzer, Ursula, Skokowa, Julia, Ossowski, Stephan, Haack, Tobias B., Mau-Holzmann, Ulrike A., Dufke, Andreas, Riess, Olaf, and Brecht, Ines B.

Published
2023
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4. Salivary gland carcinomas in children and adolescents: A retrospective analysis of the European Cooperative Study Group for Pediatric Rare Tumours (EXPeRT)

Author

Schneider, Dominik T., Orbach, Daniel, Virgone, Calogero, Reguerre, Yves, Godzinski, Jan, Bien, Ewa, Bisogno, Gianni, Roganovic, Jelena, Farinha, Nuno Reis, Ben-Ami, Tal, Stachowicz-Stencel, Teresa, Synakiewicz, Anna, Brennan, Bernadette, Chiaravalli, Stefano, Bernbeck, Benedikt, Mallebranche, Coralie, Couloigner, Vincent, Abele, Michael, Brecht, Ines B., and Ferrari, Andrea

Published
2023
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6. UV-radiation and MC1R germline mutations are risk factors for the development of conventional and spitzoid melanomas in children and adolescents

Author

Liebmann, Alexandra, Admard, Jakob, Armeanu-Ebinger, Sorin, Wild, Hannah, Abele, Michael, Gschwind, Axel, Seibel-Kelemen, Olga, Seitz, Christian, Bonzheim, Irina, Riess, Olaf, Demidov, German, Sturm, Marc, Schadeck, Malou, Pogoda, Michaela, Bien, Ewa, Krawczyk, Malgorzata, Jüttner, Eva, Mentzel, Thomas, Cesen, Maja, Pfaff, Elke, Kunc, Michal, Forchhammer, Stephan, Forschner, Andrea, Leiter-Stöppke, Ulrike, Eigentler, Thomas K., Schneider, Dominik T., Schroeder, Christopher, Ossowski, Stephan, and Brecht, Ines B.

Published
2023
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9. Primary lung carcinoma in children and adolescents: An analysis of the European Cooperative Study Group on Paediatric Rare Tumours (EXPeRT)

Author

Abele, Michael, Bajčiová, Viera, Wright, Fiona, Behjati, Sam, Voggel, Sarah, Schneider, Dominik T., Mallebranche, Coralie, Česen Mazič, Maja, Guillén, Gabriela, Krawczyk, Malgorzata, Bień, Ewa, Roganovic, Jelena, Bisogno, Gianni, Chiaravalli, Stefano, Ferrari, Andrea, Brecht, Ines B., Orbach, Daniel, Reguerre, Yves, and Virgone, Calogero

Published
2022
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12. Long-Term Outcomes and Quality of Life of High-Risk Neuroblastoma Patients Treated with a Multimodal Treatment Including Anti-GD2 Immunotherapy: A Retrospective Cohort Study.

Author

Flaadt, Tim, Rehm, Jonas, Simon, Thorsten, Hero, Barbara, Ladenstein, Ruth L., Lode, Holger N., Grabow, Desiree, Nolte, Sandra, Crazzolara, Roman, Greil, Johann, Ebinger, Martin, Abele, Michael, Holzer, Ursula, Döring, Michaela, Schulte, Johannes H., Bader, Peter, Schlegel, Paul-Gerhardt, Eyrich, Matthias, Lang, Peter, and Klingebiel, Thomas

Subjects
THERAPEUTIC use of monoclonal antibodies, RISK assessment, TUMORS in children, RESEARCH funding, IMMUNOTHERAPY, QUESTIONNAIRES, TREATMENT effectiveness, RETROSPECTIVE studies, LONGITUDINAL method, QUALITY of life, COMBINED modality therapy, MEDICAL records, ACQUISITION of data, NEUROBLASTOMA, DISEASE risk factors
Abstract

Simple Summary: High-risk neuroblastoma is a childhood cancer with poor survival rates despite intensive treatment. Adding anti-GD2 immunotherapy to standard therapies has improved survival, but little is known about the long-term effects (of the anti-GD2-therapy) on and quality of life of survivors. This study followed patients treated with a multimodal treatment including anti-GD2 therapy for over 20 years to assess their outcomes, side effects, and quality of life. While many survivors experienced long-term health issues, such as hearing loss, endocrine problems, and autoimmune diseases, their overall quality of life was often better than that of the general population. This research provides valuable insights into the long-term impact of anti-GD2 therapy, helping to guide future treatments and improve outcomes for children with high-risk neuroblastoma. In addition, the findings highlight the need for lifelong medical care to manage late effects and improve treatment strategies. Background: The incorporation of anti-GD2 antibodies such as ch14.18/SP2/0 into the multimodal treatment of high-risk neuroblastoma (HR-NB) patients has improved their outcomes. As studies assessing the long-term outcomes, long-term sequelae, and health-related quality of life (HRQoL) of this treatment are limited, this retrospective analysis aimed to explore these. Patients and Methods: Between 1991 and 2002, 65 children received a multimodal treatment, including ch14.18/SP2/0, for primary HR-NB. All received chemotherapy according to the NB90/NB97 trial, 51 received high-dose chemotherapy, and all received ch14.18/SP2/0 treatment. We analyzed the long-term sequelae and HRQoL (EORTC QLQ-C30), and evaluated overall and event-free survival (OS/EFS). Results: Twenty-five survivors were evaluated for HRQoL and long-term effects. All reported long-term sequelae, including ototoxicity in 16/25 (64%), cardiac toxicity in 6/25 (24%), and endocrine toxicity in 19/25 (76%) patients. Chronic diarrhea was reported in 20% of female patients. Seven patients developed autoimmune diseases. HRQoL scores were better across multiple scales than those of the matched German general population. Twenty-five-year OS and EFS were 50.8% (95% confidence interval: 31–55) and 43% (30.1–55.3), with 33 (50.8%) long-term survivors. Thirty-two patients died: 28 (43.1%) because of progression/relapse and 4 (6.2%) because of secondary neoplasms. Conclusions: Multimodal treatment, including ch14.18/SP2/0, can achieve long-term survival in HR-NB patients, with a substantial proportion of survivors reporting better HRQoL compared to the general population. All patients reported long-term side effects mostly attributable to chemotherapy and radiotherapy. The relatively high prevalence of autoimmune diseases and persistent diarrhea warrants additional longitudinal research on individuals treated with anti-GD2 antibodies. [ABSTRACT FROM AUTHOR]

Published
2025
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15. Melanoma of the central nervous system based on neurocutaneous melanocytosis in childhood: A rare but fatal condition

Author

Abele, Michael, primary, Forchhammer, Stephan, additional, Eigentler, Thomas K., additional, Popescu, Aryana, additional, Maschke, Linda, additional, Lohse, Judith, additional, Lehrnbecher, Thomas, additional, Behnisch, Wolfgang, additional, Groll, Andreas H., additional, Jakob, Marcus, additional, Bernbeck, Benedikt, additional, Brecht, Ines B., additional, and Schneider, Dominik T., additional

Published
2024
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16. Characterization of PRAME immunohistochemistry reveals lower expression in pediatric melanoma compared to adult melanoma.

Author

Forchhammer, Stephan, Aebischer, Valentin, Lenders, Daniela, Seitz, Christian M., Schroeder, Christopher, Liebmann, Alexandra, Abele, Michael, Wild, Hannah, Bien, Ewa, Krawczyk, Malgorzata, Schneider, Dominik T., Brecht, Ines B., Flatz, Lukas, and Hahn, Matthias

Subjects
MELANOMA, BRAF genes, YOUNG adults, NEVUS, IMMUNOHISTOCHEMISTRY, ADULTS
Abstract

Pediatric melanomas are rare tumors that have clinical and histological differences from adult melanomas. In adult melanoma, the immunohistochemical marker PRAME is increasingly employed as a diagnostic adjunct. PRAME is also under investigation as a target structure for next‐generation immunotherapies including T‐cell engagers. Little is known about the characteristics of PRAME expression in pediatric melanoma. In this retrospective study, samples from 25 pediatric melanomas were compared with control groups of melanomas in young adults (18–30 years; n = 32), adult melanoma (>30 years, n = 30), and benign melanocytic nevi in children (0–18 years; n = 30) with regard to the immunohistochemical expression of PRAME (diffuse PRAME expression >75%/absolute expression). Pediatric melanomas show lower diffuse PRAME expression (4%) and lower absolute PRAME expression (25%) compared to young adult melanomas (15.6%/46.8%) and adult melanomas (50%/70%). A significant age‐dependent expression could be observed. An analysis of event‐free survival shows no prognostic role for PRAME in pediatric melanoma and young adult melanoma, but a significant association with diffuse PRAME expression in adulthood. The age dependency of PRAME expression poses a potential pitfall in the diagnostic application of melanocytic tumors in young patients and may limit therapeutic options within this age group. The immunohistochemical expression of the tumor‐associated antigen PRAME is an increasingly important diagnostic marker for melanocytic tumors and is gaining attention as a possible immunotherapeutic target in melanoma. As the available data primarily stem from adult melanoma, and given the clinical and histological distinctions in pediatric melanomas, our understanding of PRAME expression in this specific patient group remains limited. The age‐dependent low PRAME expression shown here constrains the use of this marker in pediatric melanoma and may also limit the use of immunotherapeutic strategies against PRAME in young patients. [ABSTRACT FROM AUTHOR]

Published
2024
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17. NUT carcinoma in pediatric patients: Characteristics, therapeutic regimens, and outcomes of 11 cases registered with the German Registry for Rare Pediatric Tumors (STEP)

Author

Flaadt, Tim, primary, Wild, Hannah, additional, Abele, Michael, additional, Frühwald, Michael, additional, Dirksen, Uta, additional, Classen, Carl F., additional, Seitz, Christian, additional, Redlich, Antje, additional, Lauer, Ulrich M., additional, Kloker, Linus, additional, Kratz, Christian, additional, Schneider, Dominik T., additional, and Brecht, Ines B., additional

Published
2023
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18. Axial motor clues to identify atypical parkinsonism: A multicentre European cohort study

Author

Østergaard, Karen, Stamelou, Maria, Tolosa, Eduardo, Kostic, Vladimir S., Cortelli, Pietro, Klockgether, Thomas, Dodel, Richard, Abele, Michael, Meissner, Wassilios, Reichmann, Heinz, Lynch, Tim, Slawek, Jaroslaw, Poewe, Werner, Wenning, Gregor K., Klaus Seppi, Mag, Krismer, Florian, Berg, Daniela, Ferreira, Joaquim, Houlden, Henry, Quinn, Niall P., Widner, Håkan, Gerhard, Alexander, Eggert, Karla Maria, Albanese, Alberto, Sorbo, Francesca del, Barone, Paolo, Pellecchia, Maria T., Bloem, Bas, Borm, Carlijn, Djaldetti, Ruth, Berardelli, Alfredo, Colosimo, Carlo, Berciano, Jose, Traykov, Latchezar, Giladi, Nir, Gurevich, Tanya, Rascol, Olivier, Galitzky, Monique, Gasser, Thomas, Borm, Carlijn D.J.M., Seppi, Klaus, Pellecchia, Maria Teresa, Johnsen, Erik L., Sambati, Luisa, Petrović, Igor, Kostić, Vladimir S., Brožová, Hana, Růžička, Evžen, Marti, Maria Jose, Canesi, Margherita, Post, Bart, Nonnekes, Jorik, and Bloem, Bastiaan R.

Published
2018
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19. Genetic landscape of congenital insensitivity to pain and hereditary sensory and autonomic neuropathies

Author

Lischka, Annette, primary, Eggermann, Katja, additional, Record, Christopher J, additional, Dohrn, Maike F, additional, Laššuthová, Petra, additional, Kraft, Florian, additional, Begemann, Matthias, additional, Dey, Daniela, additional, Eggermann, Thomas, additional, Beijer, Danique, additional, Šoukalová, Jana, additional, Laura, Matilde, additional, Rossor, Alexander M, additional, Mazanec, Radim, additional, Van Lent, Jonas, additional, Tomaselli, Pedro J, additional, Ungelenk, Martin, additional, Debus, Karlien Y, additional, Feely, Shawna M E, additional, Gläser, Dieter, additional, Jagadeesh, Sujatha, additional, Martin, Madelena, additional, Govindaraj, Geeta M, additional, Singhi, Pratibha, additional, Baineni, Revanth, additional, Biswal, Niranjan, additional, Ibarra-Ramírez, Marisol, additional, Bonduelle, Maryse, additional, Gess, Burkhard, additional, Sánchez, Juan Romero, additional, Suthar, Renu, additional, Udani, Vrajesh, additional, Nalini, Atchayaram, additional, Unnikrishnan, Gopikrishnan, additional, Junior, Wilson Marques, additional, Mercier, Sandra, additional, Procaccio, Vincent, additional, Bris, Céline, additional, Suresh, Beena, additional, Reddy, Vaishnavi, additional, Skorupinska, Mariola, additional, Bonello-Palot, Nathalie, additional, Mochel, Fanny, additional, Dahl, Georg, additional, Sasidharan, Karthika, additional, Devassikutty, Fiji M, additional, Nampoothiri, Sheela, additional, Doriqui, Maria J Rodovalho, additional, Müller-Felber, Wolfgang, additional, Vill, Katharina, additional, Haack, Tobias B, additional, Dufke, Andreas, additional, Abele, Michael, additional, Stucka, Rolf, additional, Siddiqi, Saima, additional, Ullah, Noor, additional, Spranger, Stephanie, additional, Chiabrando, Deborah, additional, Bolgül, Behiye S, additional, Parman, Yesim, additional, Seeman, Pavel, additional, Lampert, Angelika, additional, Schulz, Jörg B, additional, Wood, John N, additional, Cox, James J, additional, Auer-Grumbach, Michaela, additional, Timmerman, Vincent, additional, de Winter, Jonathan, additional, Themistocleous, Andreas C, additional, Shy, Michael, additional, Bennett, David L, additional, Baets, Jonathan, additional, Hübner, Christian A, additional, Leipold, Enrico, additional, Züchner, Stephan, additional, Elbracht, Miriam, additional, Çakar, Arman, additional, Senderek, Jan, additional, Hornemann, Thorsten, additional, Woods, C Geoffrey, additional, Reilly, Mary M, additional, and Kurth, Ingo, additional

Published
2023
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21. Umsetzung eines sozialraumorientierten Konzeptes im Förder- und Betreuungsbereich

Author

Abele, Michael, Mautsch, Norbert, and Schlummer, Werner

Subjects
Vocational Education, Werkstatt für Behinderte, Special education for the handicapped, Förderbedarf, Sozialraum, Workshop for people with disabilities, Labour, Erziehung, Schul- und Bildungswesen, Sonderpädagogik, Berufs- und Wirtschaftspädagogik, Modellversuch, Unterstützung, Education, Pilot project, ddc:370, Berufsbildung, Germany, Special needs education, Partizipation, Remedial instruction sciences, Deutschland, Arbeit
Abstract

In Baden-Württemberg bieten sogenannte Förder- und Betreuungsbereiche (FuB) Arbeits- und Unterstützungsmöglichkeiten für Menschen mit hohem Unterstützungsbedarf. In diesem Beitrag erläutern die Autoren mit ihrer Praxis- und Einrichtungserfahrung entsprechende Aktivitäten einer Trägereinrichtung und zeigen dabei Wurzeln und Weiterentwicklungen auf im Kontext der beruflichen Bildung und der Sozialraumorientierung. (DIPF/Orig.)

Published
2023

22. Haploidentical hematopoietic stem cell transplantation as individual treatment option in pediatric patients with very high-risk sarcomas

Author

Eichholz, Thomas, primary, Döring, Michaela, additional, Giardino, Stefano, additional, Gruhn, Bernd, additional, Seitz, Christian, additional, Flaadt, Tim, additional, Schwinger, Wolfgang, additional, Ebinger, Martin, additional, Holzer, Ursula, additional, Mezger, Markus, additional, Teltschik, Heiko-Manuel, additional, Sparber-Sauer, Monika, additional, Koscielniak, Ewa, additional, Abele, Michael, additional, Handgretinger, Rupert, additional, and Lang, Peter, additional

Published
2023
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23. Epidemiology and Characteristics of Gastric Carcinoma in Childhood—An Analysis of Data from Population-Based and Clinical Cancer Registries

Author

Abele, Michael, primary, Grabner, Lisa, additional, Blessing, Tabea, additional, Block, Andreas, additional, Agaimy, Abbas, additional, Kratz, Christian, additional, Simon, Thorsten, additional, Calaminus, Gabriele, additional, Heine, Sabine, additional, Corbacioglu, Selim, additional, Christiansen, Holger, additional, Schneider, Dominik T., additional, and Brecht, Ines B., additional

Published
2023
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24. Incidences and characteristics of primary lung malignancies in childhood in Germany: An analysis of population‐based data from German cancer registries

Author

Abele, Michael, primary, Voggel, Sarah, additional, Bremensdorfer, Claudia, additional, Spix, Claudia, additional, Erdmann, Friederike, additional, Kuhlen, Michaela, additional, Redlich, Antje, additional, Ebinger, Martin, additional, Lang, Peter, additional, Schneider, Dominik T., additional, and Brecht, Ines B., additional

Published
2022
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32. Red flags for multiple system atrophy

Author

Köllensperger, Martin, Geser, Felix, Seppi, Klaus, Stampfer-Kountchev, Michaela, Sawires, Martin, Scherfler, Christoph, Boesch, Sylvia, Mueller, Joerg, Koukouni, Vasiliki, Quinn, Niall, Pellecchia, Maria Teresa, Barone, Paolo, Schimke, Nicole, Dodel, Richard, Oertel, Wolfgang, Dupont, Erik, stergaard, Karen, Daniels, Christine, Deuschl, Günther, Gurevich, Tanya, Giladi, Nir, Coelho, Miguel, Sampaio, Cristina, Nilsson, Christer, Widner, Håkan, Sorbo, Francesca Del, Albanese, Alberto, Cardozo, Adriana, Tolosa, Eduardo, Abele, Michael, Klockgether, Thomas, Kamm, Christoph, Gasser, Thomas, Djaldetti, Ruth, Colosimo, Carlo, Meco, Giuseppe, Schrag, Anette, Poewe, Werner, and Wenning, Gregor K.

Published
2008
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37. Health-Related Quality of Life in Multiple System Atrophy

Author

Schrag, Anette, Geser, Felix, Stampfer-Kountchev, Michaela, Seppi, Klaus, Sawires, Martin, Köllensperger, Martin, Scherfler, Christoph, Quinn, Niall, Pellecchia, Maria T., Barone, Paolo, del Sorbo, Francesca, Albanese, Alberto, Ostergaard, Karen, Dupont, Erik, Cardozo, Adriana, Tolosa, Eduardo, Nilsson, Christer F., Widner, Håkan, Lindvall, Olle, Giladi, Nir, Gurevich, Tanya, Daniels, Christine, Deuschl, Günther, Coelho, Miguel, Sampaio, Cristina, Abele, Michael, Klockgether, Thomas, Schimke, Nicole, Eggert, Karla M., Oertel, Wolfgang, Djaldetti, Ruth, Colosimo, Carlo, Meco, Giuseppe, Poewe, Werner, and Wenning, Gregor K.

Published
2006
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38. Progression of multiple system atrophy (MSA): A prospective natural history study by the European MSA Study Group (EMSA SG)

Author

Geser, Felix, Wenning, Gregor K., Seppi, Klaus, Stampfer-Kountchev, Michaela, Scherfler, Christoph, Sawires, Martin, Frick, Carolin, Ndayisaba, Jean-Pierre, Ulmer, Hanno, Pellecchia, Maria T., Barone, Paolo, Kim, Hee T., Hooker, Juzar, Quinn, Niall P., Cardozo, Adriana, Tolosa, Eduardo, Abele, Michael, Klockgether, Thomas, stergaard, Karen, Dupont, Erik, Schimke, Nicole, Eggert, Karla M., Oertel, Wolfgang, Djaldetti, Ruth, and Poewe, Werner

Published
2006
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44. The Dissolution of Outcast Status and Outcast Property in Meiji Japan

Author

Abele, Michael and Abele, Michael

Abstract

This article analyzes Meiji government efforts to regulate the beef and rendering trades alongside the local response of the former kawata outcastes of Saraike Village (today Osaka Prefecture). In 1872, Sakai Prefecture, (now Osaka and Nara prefectures), issued new regulations for slaughterhouses and rendering facilities. As part of the implantation of these regulations, prefectural authorities investigated established rendering and beef production activities in former kawata communities within the prefecture. In the ninth month of Meiji 5 (1872), a prefectural official investigated the butchers and renderers of Saraike Village. When some among the former kawata community were discovered to be violating the prohibitions on mixing the meat of health cattle and already-dead animals, several villagers were arrested and all villagers prohibited from these trades until they could demonstrate compliance with new regulations. The extensive documentation this case left behind allows us to catch a glimpse into how the abolition of status-based property was navigated by rural kawata villagers. By focusing on the village level, I will show that those kawata that took over the rendering and butchering trades after the abolition of kawata status were in fact the same men who were circumventing status-based property in the Tokugawa period.

Published
2019

46. Axial motor clues to identify atypical parkinsonism: A multicentre European cohort study

Author

Borm, Carlijn D.J.M., primary, Krismer, Florian, additional, Wenning, Gregor K., additional, Seppi, Klaus, additional, Poewe, Werner, additional, Pellecchia, Maria Teresa, additional, Barone, Paolo, additional, Johnsen, Erik L., additional, Østergaard, Karen, additional, Gurevich, Tanya, additional, Djaldetti, Ruth, additional, Sambati, Luisa, additional, Cortelli, Pietro, additional, Petrović, Igor, additional, Kostić, Vladimir S., additional, Brožová, Hana, additional, Růžička, Evžen, additional, Marti, Maria Jose, additional, Tolosa, Eduardo, additional, Canesi, Margherita, additional, Post, Bart, additional, Nonnekes, Jorik, additional, Bloem, Bastiaan R., additional, Stamelou, Maria, additional, Kostic, Vladimir S., additional, Klockgether, Thomas, additional, Dodel, Richard, additional, Abele, Michael, additional, Meissner, Wassilios, additional, Reichmann, Heinz, additional, Lynch, Tim, additional, Slawek, Jaroslaw, additional, Klaus Seppi, Mag, additional, Berg, Daniela, additional, Ferreira, Joaquim, additional, Houlden, Henry, additional, Quinn, Niall P., additional, Widner, Håkan, additional, Gerhard, Alexander, additional, Eggert, Karla Maria, additional, Albanese, Alberto, additional, Sorbo, Francesca del, additional, Pellecchia, Maria T., additional, Bloem, Bas, additional, Borm, Carlijn, additional, Berardelli, Alfredo, additional, Colosimo, Carlo, additional, Berciano, Jose, additional, Traykov, Latchezar, additional, Giladi, Nir, additional, Rascol, Olivier, additional, Galitzky, Monique, additional, and Gasser, Thomas, additional

Published
2018
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48. Development and validation of the Unified Multiple System Atrophy Rating Scale (UMSARS)

Author

Wenning, Gregor K., Tison, François, Seppi, Klaus, Sampiao, Cristina, Diem, Anja, Yekhlef, Farid, Ghorayeb, Imad, Ory, Fabienne, Galitzky, Monique, Scaravilli, Tommaso, Bozi, Maria, Colosimo, Carlo, Gilman, Sid, Shults, Clifford W., Quinn, Niall P., Rascol, Olivier, Poewe, Werner, Dupont, Erik, Ostergaard, Karen, Tolosa, Eduardo, Klockgether, Thomas, Dodel, Richard, Abele, Michael, Pollak, Pierre, Geser, Felix, Stamfer, Michaela, Deuschl, Günther, Daniels, Christine, Coelho, Miguel, Pirtosek, Zvezdan, Brooks, David J., Fowler, Claire, Lees, Andrew, Mathias, Christopher J., Revesz, Tamas, Gerhard, Alexander, Holton, Janice, Schrag, Anette, Wood, Nick, Lindvall, Olle, Widner, Håkan, Grabowski, Martin, Nilsson, Christer F., Oertel, Wolfgang, Eggert, Karla Maria, Schimke, Nicole, Albanese, Alberto, del Sorbo, Francesco, Barone, Paolo, Carella, Francesco, Djaljetti, Ruth, Meco, Giuseppe, Berciano, Jose, Gonzalez-Mandly, Andres, Giladi, Nir, Gurevich, Tanya, Gasser, Thomas, Kamm, Christoph, Aquilonius, Sten Magnus, and Bergquist, Jonas

Subjects
Male, Gerontology, medicine.medical_specialty, Cerebellar Ataxia, Scale (ratio), education, Autonomic Nervous System, Severity of Illness Index, Speech Disorders, Part iii, Disability Evaluation, Hypotension, Orthostatic, Atrophy, Physical medicine and rehabilitation, Erectile Dysfunction, Parkinsonian Disorders, Rating scale, Surveys and Questionnaires, Internal consistency, Activities of Daily Living, Validation, medicine, Humans, Interrater Reliability, Age of Onset, Observer Variation, Reproducibility of Results, Multiple System Atrophy, Urinary Retention, Unified Multiple System Atrophy Rating Scale, medicine.disease, Degree (music), Inter-rater reliability, Urinary Incontinence, Neurology, Female, International Cooperative Ataxia Rating Scale, Neurology (clinical), Psychology
Abstract

We aimed to develop and validate a novel rating scale for multiple system atrophy (Unified Multiple System Atrophy Rating Scale - UMSARS). The scale comprises the following components: Part I, historical, 12 items; Part II, motor examination, 14 items; Part III, autonomic examination; and Part IV, global disability scale. For validation purposes, 40 MSA patients were assessed in four centers by 4 raters per center (2 senior and 2 junior raters). The raters applied the UMSARS, as well as a range of other scales, including the Unified Parkinson's Disease Rating Scale (UPDRS) and the International Cooperative Ataxia Rating Scale (ICARS). Internal consistency was high for both UMSARS-1 (Crohnbach's alpha = 0.84) and UMSARS-II (Crohnbach's alpha = 0.90) sections. The interrater reliability of most of the UMSARS-I and -II items as well as of total UMSARS-I and -II subscores was substantial (k (w) = 0.6-0.8) to excellent (k (w) > 0.8). UMSARS-II correlated well with UPDRS-III and ICARS (rs > 0.8). Depending on the degree of the patient's disability, completion of the entire UMSARS took 30 to 45 minutes. Based on our findings, the UMSARS appears to be a multidimensional, reliable, and valid scale for semiquantitative clinical assessments of MSA patients.

Published
2004
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