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Page 1
Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey.
Faye F, Crocione C, Anido de Peña R, Bellagambi S, Escati Peñaloza L, Hunter A, Jensen L, Oosterwijk C, Schoeters E, de Vicente D, Faivre L, Wilbur M, Le Cam Y, Dubief J. Faye F, et al. Among authors: schoeters e. Eur J Hum Genet. 2024 Sep;32(9):1116-1126. doi: 10.1038/s41431-024-01604-z. Epub 2024 May 16. Eur J Hum Genet. 2024. PMID: 38755315 Free PMC article.
Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken.
Piette Y, Van den Bossche F, Aerts J, Aerts N, Ajeganova S, Badot V, Berghen N, Blockmans D, Brusselle G, Caeyers N, De Decker M, De Haes P, De Cock C, De Keyser F, De Langhe E, Delcroix M, De Nutte H, De Pauw M, Depicker A, De Sutter A, De Sutter J, Du Four T, Frank C, Goubau J, Guiot J, Gutermuth J, Heeman L, Houssiau F, Hennes I, Lenaerts J, Lintermans A, Loeys B, Luyten H, Maeyaert B, Malfait F, Moeyersoons A, Mostmans Y, Nijs J, Poppe B, Polfliet K, Ruttens D, Sabato V, Schoeters E, Slabbynck H, Stuer A, Tamirou F, Thevissen K, Van Kersschaever G, Vanneuville B, Van Offel J, Vanthuyne M, Van Wabeke J, Verbist C, Vos I, Westhovens R, Wuyts W, Yserbyt J, Smith V. Piette Y, et al. Among authors: schoeters e. Acta Clin Belg. 2024 Feb;79(1):26-33. doi: 10.1080/17843286.2023.2280737. Epub 2024 Jan 2. Acta Clin Belg. 2024. PMID: 38108332 Free article.
International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND).
de Vries PJ, Heunis TM, Vanclooster S, Chambers N, Bissell S, Byars AW, Flinn J, Gipson TT, van Eeghen AM, Waltereit R, Capal JK, Cukier S, Davis PE, Smith C, Kingswood JC, Schoeters E, Srivastava S, Takei M, Gardner-Lubbe S, Kumm AJ, Krueger DA, Sahin M, De Waele L, Jansen AC. de Vries PJ, et al. Among authors: schoeters e. J Neurodev Disord. 2023 Sep 14;15(1):32. doi: 10.1186/s11689-023-09500-1. J Neurodev Disord. 2023. PMID: 37710171 Free PMC article.
Development and Feasibility of the Self-Report Quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist (TAND-SQ).
Heunis TM, Chambers N, Vanclooster S, Bissell S, Byars AW, Capal JK, Cukier S, Davis PE, de Vries MC, De Waele L, Flinn J, Gardner-Lubbe S, Gipson T, Kingswood JC, Krueger DA, Kumm AJ, Sahin M, Schoeters E, Smith C, Srivastava S, Takei M, van Eeghen AM, Waltereit R, Jansen AC, de Vries PJ. Heunis TM, et al. Among authors: schoeters e. Pediatr Neurol. 2023 Oct;147:101-123. doi: 10.1016/j.pediatrneurol.2023.07.001. Epub 2023 Jul 7. Pediatr Neurol. 2023. PMID: 37598571 Free PMC article.
Empowering Families Through Technology: A Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem).
Heunis TM, Bissell S, Byars AW, Capal JK, Chambers N, Cukier S, Davis PE, De Waele L, Flinn J, Gardner-Lubbe S, Gipson T, Kingswood JC, Krueger DA, Kumm AJ, Sahin M, Schoeters E, Smith C, Srivastava S, Takei M, Vanclooster S, van Eeghen AM, Waltereit R, Jansen AC, de Vries PJ. Heunis TM, et al. Among authors: schoeters e. Front Psychiatry. 2022 Feb 28;13:834628. doi: 10.3389/fpsyt.2022.834628. eCollection 2022. Front Psychiatry. 2022. PMID: 35295772 Free PMC article.
The research landscape of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND)-a comprehensive scoping review.
Vanclooster S, Bissell S, van Eeghen AM, Chambers N, De Waele L, Byars AW, Capal JK, Cukier S, Davis P, Flinn J, Gardner-Lubbe S, Gipson T, Heunis TM, Hook D, Kingswood JC, Krueger DA, Kumm AJ, Sahin M, Schoeters E, Smith C, Srivastava S, Takei M, Waltereit R, Jansen AC, de Vries PJ. Vanclooster S, et al. Among authors: schoeters e. J Neurodev Disord. 2022 Feb 13;14(1):13. doi: 10.1186/s11689-022-09423-3. J Neurodev Disord. 2022. PMID: 35151277 Free PMC article. Review.
24 results