TOSCA - first international registry to address knowledge gaps in the natural history and management of tuberous sclerosis complex
Kingswood, John C, Bruzzi, Paolo, Curatolo, Paolo, de Vries, Petrus J, Fladrowski, Carla, Hertzberg, Christoph, Jansen, Anna C, Jozwiak, Sergiusz, Nabbout, Rima, Sauter, Matthias, Touraine, Renaud, O'Callaghan, Finbar, Zonnenberg, Bernard, Crippa, Stefania, Comis, Silvia, d'Augères, Guillaume Beaure, Belousova, Elena, Carter, Tom, Cottin, Vincent, Dahlin, Maria, Ferreira, José Carlos, Macaya, Alfons, Benedik, Mirjana Perkovic, Sander, Valentin, Youroukos, Sotirios, Castellana, Ramon, Ulker, Bulent, Feucht, Martha
Published in Orphanet journal of rare diseases (26.11.2014)
Published in Orphanet journal of rare diseases (26.11.2014)
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Journal Article
Renal angiomyolipoma in patients with tuberous sclerosis complex: findings from the TuberOus SClerosis registry to increase disease Awareness
Kingswood, J Chris, Belousova, Elena, Benedik, Mirjana P, Carter, Tom, Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D’ Amato, Lisa, d'Augères, Guillaume Beaure, de Vries, Petrus J, Ferreira, José C, Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A, Macaya, Alfons, Marques, Ruben, Nabbout, Rima, O’Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Jansen, Anna C
Published in Nephrology, dialysis, transplantation (01.03.2019)
Published in Nephrology, dialysis, transplantation (01.03.2019)
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Journal Article
Involvement of mental health professionals in the treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND): results of a multinational European electronic survey
Waltereit, Robert, Beaure d'Augères, Guillaume, Jancic, Jasna, Kingswood, John Chris, Koleva, Maya, Marques, Ruben, Villanueva, Vicente, Auvin, Stéphane
Published in Orphanet journal of rare diseases (12.05.2021)
Published in Orphanet journal of rare diseases (12.05.2021)
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Journal Article
Renal Manifestations of Tuberous Sclerosis Complex: Key Findings From the Final Analysis of the TOSCA Study Focussing Mainly on Renal Angiomyolipomas
Kingswood, J. Chris, Belousova, Elena, Benedik, Mirjana P., Carter, Tom, Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D'Amato, Lisa, Beaure d'Augères, Guillaume, de Vries, Petrus J., Ferreira, José C., Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A., Macaya, Alfons, Marques, Ruben, Nabbout, Rima, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Jansen, Anna C., Sauter, Matthias
Published in Frontiers in neurology (16.09.2020)
Published in Frontiers in neurology (16.09.2020)
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Journal Article
Historical Patterns of Diagnosis, Treatments, and Outcome of Epilepsy Associated With Tuberous Sclerosis Complex: Results From TOSCA Registry
Nabbout, Rima, Belousova, Elena, Benedik, Mirjana P., Carter, Tom, Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D'Amato, Lisa, Beaure d'Augères, Guillaume, de Vries, Petrus J., Ferreira, José C., Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A., Macaya, Alfons, Marques, Ruben, O'Callaghan, Finbar, Qin, Jiong, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Jansen, Anna C., Kingswood, J. Chris
Published in Frontiers in neurology (08.09.2021)
Published in Frontiers in neurology (08.09.2021)
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Journal Article
Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND): New Findings on Age, Sex, and Genotype in Relation to Intellectual Phenotype
de Vries, Petrus J, Belousova, Elena, Benedik, Mirjana P, Carter, Tom, Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D'Amato, Lisa, Beaure d'Augères, Guillaume, Ferreira, José C, Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A, Macaya, Alfons, Marques, Ruben, Nabbout, Rima, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Kingswood, John C, Jansen, Anna C
Published in Frontiers in neurology (07.07.2020)
Published in Frontiers in neurology (07.07.2020)
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Journal Article
Newly Diagnosed and Growing Subependymal Giant Cell Astrocytoma in Adults With Tuberous Sclerosis Complex: Results From the International TOSCA Study
Jansen, Anna C, Belousova, Elena, Benedik, Mirjana P, Carter, Tom, Cottin, Vincent, Curatolo, Paolo, D'Amato, Lisa, Beaure d'Augères, Guillaume, de Vries, Petrus J, Ferreira, José C, Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A, Macaya, Alfons, Marques, Ruben, Nabbout, Rima, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Kingswood, John C
Published in Frontiers in neurology (2019)
Published in Frontiers in neurology (2019)
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Journal Article
Treatment Patterns and Use of Resources in Patients With Tuberous Sclerosis Complex: Insights From the TOSCA Registry
Marques, Ruben, Belousova, Elena, Benedik, Mirjana P., Carter, Tom, Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D'Amato, Lisa, Beaure d'Augères, Guillaume, de Vries, Petrus J., Ferreira, José C., Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A., Macaya, Alfons, Nabbout, Rima, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Kingswood, John C., Jansen, Anna C.
Published in Frontiers in neurology (2019)
Published in Frontiers in neurology (2019)
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Journal Article
The TOSCA Registry for Tuberous Sclerosis-Lessons Learnt for Future Registry Development in Rare and Complex Diseases
Marques, Ruben, Belousova, Elena, Benedik, Mirjana P, Carter, Tom, Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D'Amato, Lisa, Beaure d'Augères, Guillaume, de Vries, Petrus J, Ferreira, José C, Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jansen, Anna C, Jozwiak, Sergiusz, Kingswood, John C, Lawson, John A, Macaya, Alfons, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Nabbout, Rima
Published in Frontiers in neurology (13.11.2019)
Published in Frontiers in neurology (13.11.2019)
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Journal Article
Burden of Illness and Quality of Life in Tuberous Sclerosis Complex: Findings From the TOSCA Study
Jansen, Anna C., Vanclooster, Stephanie, de Vries, Petrus J., Fladrowski, Carla, Beaure d'Augères, Guillaume, Carter, Tom, Belousova, Elena, Benedik, Mirjana P., Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D'Amato, Lisa, Ferreira, José C., Feucht, Martha, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A., Macaya, Alfons, Marques, Ruben, Nabbout, Rima, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Kingswood, J. Chris
Published in Frontiers in neurology (28.08.2020)
Published in Frontiers in neurology (28.08.2020)
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Journal Article
Epilepsy in tuberous sclerosis complex: Findings from the TOSCA Study
Benedik, Mirjana P., Carter, Tom, Dahlin, Maria, D´Amato, Lisa, de Vries, Petrus J., Feucht, Martha, Fladrowski, Carla, Macaya, Alfons, O'Callaghan, Finbar, Sander, Valentin, Shah, Seema, Youroukos, Sotiris, Zonnenberg, Bernard, Shinohara, Nobuo, Horie, Shigeo, Imai, Katsumi, Kaneda, Mari, Kaneko, Hideo, Uchida, Yasushi, Endo, Shoichi, Inoue, Yoshikazu, Uruno, Katsuhisa, Yapici, Zuhal, Agranovich, Oleg, Vladimirovna Maksimova, Yulia, Karas, Antonina, Jiang, Yuwu, Xu, Kaifeng, Zhang, Yushi, Luan, Guoming, Ye, Dingwei, Liao, Weiping, YAN, Bo, Deng, Yanchun, Liu, Zhisheng, Chi, Ching‐Shiang, Huang, Chao‐Ching, Riney, Kate, Kwan, Patrick, Likasitwattanakul, Surachai, Sriudomkajorn, Somjit, Wilmshurst, Jo, Segel, Reeval, Gilboa, Tal, Tzadok, Michal, Syrigou Papavasiliou, Antigone, Giannakodimos, Stylianos, Pavlou, Evangelos, Dhooghe, Marc, Verhelst, Hélène, Leroy, Patricia, Demonceau, Nathalie, Van Bogaert, Patrick, Ceulemans, Berten, Dom, Lina, De Saint Martin, Anne, Milh, Mathieu, Ville, Dorothee, Auvin, Stéphane, Berquin, Patrick, Nguyen The Tich, Sylvie, Godet, Bertrand, Rojas, Maria Luz Ruiz Falco, Planas, Jaume Campistol, Dura, Patricia Smeyers, Pison, Javier Lopez, Laso, Eduardo Lopez, Salas, Ana Camacho, Carrera, Itxaso Marti, Salcedo, Eduardo Martinez, Candela, Ramon Cancho, Vieira, Jose Pedro, Monteiro, José Paulo da Silva Oliveira, Luis, Catarina Sofia Marceano Ribeiro, Pires Mendonca, Carla, Strautmanis, Jurgis, Gambardella, Antonio, Buono, Salvatore, Fontana, Elena, Bernardina, Bernardo Dalla, Cosma, Iuliu Stefan Bacos, Popescu, Laura, Zitterbart, Karel, Payerova, Jaroslava, Zilinska, Zuzana, Rostasy, Kevin, Elmslie, Frances, Uldall, Peter, Uvebrant, Paul, Rask, Olof, Sloerdahl, Andreas, Solhoff, Ragnar, Radzikowska, Elzbieta Janina, Wysocki, Mariusz, Fischereder, Michael, Kurlemann, Gerhard, Wiemer‐Kruel, Adelheid, Budde, Klemens, Knuf, Markus, Hartmann, Hans
Published in Epilepsia open (01.03.2019)
Published in Epilepsia open (01.03.2019)
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Journal Article
Clinical Characteristics of Subependymal Giant Cell Astrocytoma in Tuberous Sclerosis Complex
Jansen, Anna C, Belousova, Elena, Benedik, Mirjana P, Carter, Tom, Cottin, Vincent, Curatolo, Paolo, Dahlin, Maria, D'Amato, Lisa, d'Augères, Guillaume Beaure, de Vries, Petrus J, Ferreira, José C, Feucht, Martha, Fladrowski, Carla, Hertzberg, Christoph, Jozwiak, Sergiusz, Lawson, John A, Macaya, Alfons, Marques, Ruben, Nabbout, Rima, O'Callaghan, Finbar, Qin, Jiong, Sander, Valentin, Sauter, Matthias, Shah, Seema, Takahashi, Yukitoshi, Touraine, Renaud, Youroukos, Sotiris, Zonnenberg, Bernard, Kingswood, John C
Published in Frontiers in neurology (2019)
Published in Frontiers in neurology (2019)
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Journal Article