Burden of Illness and Quality of Life in Tuberous Sclerosis Complex: Findings From the TOSCA Study. Jansen, A., Vanclooster, S., de Vries, P., Fladrowski, C., Beaure d'Augères , G., Carter, T., Belousova, E., Benedik, M., Cottin, V., Curatolo, P., Dahlin, M., D'Amato, L., Ferreira, J., Feucht, M., Hertzberg, C., Jozwiak, S., Lawson, J., Macaya, A., Marques, R., Nabbout, R., O'Callaghan, F., Qin, J., Sander, V., Sauter, M., Shah, S., Takahashi, Y., Touraine, R., Youroukos, S., Zonnenberg, B., Kingswood, J., Shinohara, N., Horie, S., Kubota, M., Tohyama, J., Imai, K., Kaneda, M., Kaneko, H., Uchida, Y., Kirino, T., Endo, S., Inoue, Y., Uruno, K., Serdaroglu, A., Yapici, Z., Anlar, B., Altunbasak, S., Lvova, O., Belyaev, O., Agranovich, O., Levitina, E., Maksimova, Y., Karas, A., Jiang, Y., Zou, L., Xu, K., Zhang, Y., Luan, G., Zhang, Y., Wang, Y., Jin, M., Ye, D., Ye, D., Zhou, L., Liu, J., Liao, J., YAN, B., Deng, Y., Jiang, L., Liu, Z., Huang, S., Li, H., Kim, K., Chen, P., Lee, H., Tsai, J., Chi, C., Huang, C., Riney, K., Yates, D., Kwan, P., Likasitwattanakul, S., Nabangchang, C., Chomtho, L., Katanyuwong, K., Sriudomkajorn, S., Wilmshurst, J., Segel, R., Gilboa, T., Tzadok, M., Fattal-Valevski, T., Papathanasopoulos, P., Papavasiliou, A., Giannakodimos, S., Gatzonis, S., Pavlou, E., Tzoufi, M., Vergeer, A., Dhooghe, M., Verhelst, H., Roelens, F., Nassogne, M., Defresne, P., Waele, L., Leroy, P., Demonceau, N., Legros, B., Bogaert, P., Ceulemans, B., Dom, L., Castelnau, P., Martin, A., Riquet, A., Milh, M., Cances, C., Pedespan, J., Ville, D., Roubertie, A., Auvin, S., Berquin, P., Richelme, C., Allaire, C., Gueden, S., Tich, S., Godet, B., da Silva Oliveira Monteiro, J., de Oliveira Ferreira Leao, M., Planas, J., Bermejo, A., Dura, P., Aparicio, S., Gonzalez, M., Pison, J., Barca, M., Laso, E., Luengo, O., Rodriguez, F., Dieguez, I., Salas, A., Carrera, I., Salcedo, E., Petri, M., Candela, R., da Conceicao Carrilho, I., Vieira, J., da Silva Oliveira Monteiro, J., de Oliveira Ferreira Leao, M., Luis, C., Mendonca, C., Endziniene, M., Strautmanis, J., Talvik, I., Canevini, M., Gambardella, A., Pruna, D., Buono, S., Fontana, E., Bernardina, B., Burloiu, C., Cosma, I., Vintan, M., Popescu, L., Zitterbart, K., Payerova, J., Bratsky, L., Zilinska, Z., Sedlmayr, U., Baumann, M., Haberlandt, E., Rostasy, K., Pataraia, E., Elmslie, F., Johnston, C., Crawford, P., Uldall, P., Uvebrant, P., Rask, O., Bjoernvold, M., Brodtkorb, E., Sloerdahl, A., Solhoff, R., Jaatun, M., Mandera, M., Radzikowska, E., Wysocki, M., Fischereder, M., Kurlemann, G., Wilken, B., K-ruel, A., Budde, K., Marquard, K., Knuf, M., Hahn, A., Hartmann, H., Merkenschlager, A., Trollmann, R., & Investigators, T. C. T. Frontiers in Neurology, 2020. Publisher: Frontiers Media S.A.
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Paper doi bibtex
Paper doi bibtex @article{jansen_burden_2020,
title = {Burden of {Illness} and {Quality} of {Life} in {Tuberous} {Sclerosis} {Complex}: {Findings} {From} the {TOSCA} {Study}},
volume = {11},
issn = {16642295},
url = {https://www.scopus.com/inward/record.uri?eid=2-s2.0-85090896990&doi=10.3389%2ffneur.2020.00904&partnerID=40&md5=1faa143e97a93bf95e1228ed0c704c24},
doi = {10.3389/fneur.2020.00904},
language = {English},
journal = {Frontiers in Neurology},
author = {Jansen, A.C. and Vanclooster, S. and de Vries, P.J. and Fladrowski, C. and Beaure d'Augères, G. and Carter, T. and Belousova, E. and Benedik, M.P. and Cottin, V. and Curatolo, P. and Dahlin, M. and D'Amato, L. and Ferreira, J.C. and Feucht, M. and Hertzberg, C. and Jozwiak, S. and Lawson, J.A. and Macaya, A. and Marques, R. and Nabbout, R. and O'Callaghan, F. and Qin, J. and Sander, V. and Sauter, M. and Shah, S. and Takahashi, Y. and Touraine, R. and Youroukos, S. and Zonnenberg, B. and Kingswood, J.C. and Shinohara, N. and Horie, S. and Kubota, M. and Tohyama, J. and Imai, K. and Kaneda, M. and Kaneko, H. and Uchida, Y. and Kirino, T. and Endo, S. and Inoue, Y. and Uruno, K. and Serdaroglu, A. and Yapici, Z. and Anlar, B. and Altunbasak, S. and Lvova, O. and Belyaev, O.V.B. and Agranovich, O. and Levitina, E.V.L. and Maksimova, Y.V.M. and Karas, A. and Jiang, Y. and Zou, L. and Xu, K. and Zhang, Y. and Luan, G. and Zhang, Y. and Wang, Y. and Jin, M. and Ye, D. and Ye, D. and Zhou, L. and Liu, J. and Liao, J. and YAN, B. and Deng, Y. and Jiang, L. and Liu, Z. and Huang, S. and Li, H. and Kim, K. and Chen, P.-L. and Lee, H.-F. and Tsai, J.-D. and Chi, C.-S. and Huang, C.-C. and Riney, K. and Yates, D. and Kwan, P. and Likasitwattanakul, S. and Nabangchang, C. and Chomtho, L.T.K. and Katanyuwong, K. and Sriudomkajorn, S. and Wilmshurst, J. and Segel, R. and Gilboa, T. and Tzadok, M. and Fattal-Valevski, T. and Papathanasopoulos, P. and Papavasiliou, A.S.P. and Giannakodimos, S. and Gatzonis, S. and Pavlou, E. and Tzoufi, M. and Vergeer, A.M.H. and Dhooghe, M. and Verhelst, H. and Roelens, F. and Nassogne, M.C.N. and Defresne, P. and Waele, L.D.W. and Leroy, P. and Demonceau, N. and Legros, B. and Bogaert, P.V.B. and Ceulemans, B. and Dom, L. and Castelnau, P. and Martin, A.D.S. and Riquet, A. and Milh, M. and Cances, C. and Pedespan, J.-M. and Ville, D. and Roubertie, A. and Auvin, S. and Berquin, P. and Richelme, C. and Allaire, C. and Gueden, S. and Tich, S.N.T. and Godet, B. and da Silva Oliveira Monteiro, J.P. and de Oliveira Ferreira Leao, M.J.S. and Planas, J.C.P. and Bermejo, A.M.B. and Dura, P.S.D. and Aparicio, S.R.A. and Gonzalez, M.J.M. and Pison, J.L.P. and Barca, M.O.B. and Laso, E.L.L. and Luengo, O.A.L. and Rodriguez, F.J.A. and Dieguez, I.M.D. and Salas, A.C.S. and Carrera, I.M.C. and Salcedo, E.M.S. and Petri, M.E.Y. and Candela, R.C.C. and da Conceicao Carrilho, I. and Vieira, J.P.V. and da Silva Oliveira Monteiro, J.P. and de Oliveira Ferreira Leao, M.J.S. and Luis, C.S.M.R. and Mendonca, C.P.M. and Endziniene, M. and Strautmanis, J. and Talvik, I. and Canevini, M.P.C. and Gambardella, A. and Pruna, D. and Buono, S. and Fontana, E. and Bernardina, B.D.B. and Burloiu, C. and Cosma, I.S.B. and Vintan, M.A.V. and Popescu, L. and Zitterbart, K. and Payerova, J. and Bratsky, L. and Zilinska, Z. and Sedlmayr, U.G. and Baumann, M. and Haberlandt, E. and Rostasy, K. and Pataraia, E. and Elmslie, F. and Johnston, C.A.J. and Crawford, P. and Uldall, P. and Uvebrant, P. and Rask, O. and Bjoernvold, M. and Brodtkorb, E. and Sloerdahl, A. and Solhoff, R. and Jaatun, M.S.G. and Mandera, M. and Radzikowska, E.J.R. and Wysocki, M. and Fischereder, M. and Kurlemann, G. and Wilken, B. and K-ruel, A.W.K. and Budde, K. and Marquard, K. and Knuf, M. and Hahn, A. and Hartmann, H. and Merkenschlager, A. and Trollmann, R. and Investigators, TOSCA Consortium TOSCA},
year = {2020},
note = {Publisher: Frontiers Media S.A.},
keywords = {Article, adolescent, adult, aged, career, caregiver, child, disease burden, educational status, employment, family life, female, human, informed consent, major clinical study, male, patient care, personal experience, psychological well-being, quality of life, questionnaire, social psychology, social support, tuberous sclerosis, unemployment, validation process},
}Downloads: 0
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T.","Papathanasopoulos, P.","Papavasiliou, A.","Giannakodimos, S.","Gatzonis, S.","Pavlou, E.","Tzoufi, M.","Vergeer, A.","Dhooghe, M.","Verhelst, H.","Roelens, F.","Nassogne, M.","Defresne, P.","Waele, L.","Leroy, P.","Demonceau, N.","Legros, B.","Bogaert, P.","Ceulemans, B.","Dom, L.","Castelnau, P.","Martin, A.","Riquet, A.","Milh, M.","Cances, C.","Pedespan, J.","Ville, D.","Roubertie, A.","Auvin, S.","Berquin, P.","Richelme, C.","Allaire, C.","Gueden, S.","Tich, S.","Godet, B.","da Silva Oliveira Monteiro, J.","de Oliveira Ferreira Leao, M.","Planas, J.","Bermejo, A.","Dura, P.","Aparicio, S.","Gonzalez, M.","Pison, J.","Barca, M.","Laso, E.","Luengo, O.","Rodriguez, F.","Dieguez, I.","Salas, A.","Carrera, I.","Salcedo, E.","Petri, M.","Candela, R.","da Conceicao Carrilho, I.","Vieira, J.","da Silva Oliveira Monteiro, J.","de Oliveira Ferreira Leao, M.","Luis, C.","Mendonca, C.","Endziniene, M.","Strautmanis, J.","Talvik, I.","Canevini, M.","Gambardella, A.","Pruna, D.","Buono, S.","Fontana, E.","Bernardina, B.","Burloiu, C.","Cosma, I.","Vintan, M.","Popescu, L.","Zitterbart, K.","Payerova, J.","Bratsky, L.","Zilinska, Z.","Sedlmayr, U.","Baumann, M.","Haberlandt, E.","Rostasy, K.","Pataraia, E.","Elmslie, F.","Johnston, C.","Crawford, P.","Uldall, P.","Uvebrant, P.","Rask, O.","Bjoernvold, M.","Brodtkorb, E.","Sloerdahl, A.","Solhoff, R.","Jaatun, M.","Mandera, M.","Radzikowska, E.","Wysocki, M.","Fischereder, M.","Kurlemann, G.","Wilken, B.","K-ruel, A.","Budde, K.","Marquard, K.","Knuf, M.","Hahn, A.","Hartmann, H.","Merkenschlager, A.","Trollmann, R.","Investigators, T. 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