Exploring transparent reporting and data availability in systematic reviews to identify subgroup evidence: imaging for suspected hepatocellular carcinoma in the non-cirrhotic liver.

Autor: Oerbekke MS; Knowlegde Institute of the Dutch Association of Medical Specialists, Utrecht, The Netherlands. m.oerbekke@kennisinstituut.nl.; Cochrane Netherlands, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands. m.oerbekke@kennisinstituut.nl., de Man RA; Department of Gastroenterology and Hepatology, Erasmus Medical Center, Rotterdam, The Netherlands., van Vilsteren FGI; Department of Gastroenterology and Hepatology, University Medical Center Groningen, Groningen, The Netherlands., Nijkamp MW; Department of Surgery, University Medical Center Groningen, Groningen, The Netherlands., Tjwa E; Department of Gastroenterology and Hepatology, Radboud University Medical Centre, Nijmegen, The Netherlands., Gaasterland CMW; Knowlegde Institute of the Dutch Association of Medical Specialists, Utrecht, The Netherlands., van der Laan MJ; Department of Surgery, University Medical Center Groningen, Groningen, The Netherlands., Hooft L; Cochrane Netherlands, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.; Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.

Publikováno v: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2024 Oct 02; Vol. 19 (1), pp. 364. Date of Electronic Publication: 2024 Oct 02.

Improving care for rare genetic neurodevelopmental disorders: A systematic review and critical appraisal of clinical practice guidelines using AGREE II.

Autor: Klein Haneveld MJ; Amsterdam UMC, University of Amsterdam, Emma Children's Hospital, Amsterdam, The Netherlands; European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability ERN-ITHACA, Clinical Genetics Department, Robert Debré University Hospital, Paris, France; Amsterdam Reproduction and Development Research Institute, Amsterdam, The Netherlands; Amsterdam Public Health Research Institute, Amsterdam, The Netherlands., Hieltjes IJ; Amsterdam UMC, University of Amsterdam, Emma Children's Hospital, Amsterdam, The Netherlands; Knowledge Institute of the Dutch Association of Medical Specialists, Utrecht, The Netherlands., Langendam MW; Amsterdam Public Health Research Institute, Amsterdam, The Netherlands; Amsterdam UMC, University of Amsterdam, Epidemiology and Data Science, Amsterdam, The Netherlands., Cornel MC; Amsterdam Reproduction and Development Research Institute, Amsterdam, The Netherlands; Amsterdam Public Health Research Institute, Amsterdam, The Netherlands; Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Human Genetics, Amsterdam, The Netherlands., Gaasterland CMW; Amsterdam UMC, University of Amsterdam, Emma Children's Hospital, Amsterdam, The Netherlands; European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability ERN-ITHACA, Clinical Genetics Department, Robert Debré University Hospital, Paris, France; Knowledge Institute of the Dutch Association of Medical Specialists, Utrecht, The Netherlands., van Eeghen AM; Amsterdam UMC, University of Amsterdam, Emma Children's Hospital, Amsterdam, The Netherlands; European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability ERN-ITHACA, Clinical Genetics Department, Robert Debré University Hospital, Paris, France; Amsterdam Reproduction and Development Research Institute, Amsterdam, The Netherlands; Amsterdam Public Health Research Institute, Amsterdam, The Netherlands; Advisium, 's Heeren Loo Zorggroep, Amersfoort, The Netherlands. Electronic address: a.m.vaneeghen@amsterdamumc.nl.

Publikováno v: Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2024 Apr; Vol. 26 (4), pp. 101071. Date of Electronic Publication: 2024 Jan 12.

Goal attainment scaling as an outcome measure in rare disease trials: a conceptual proposal for validation.

Autor: Gaasterland CMW; Pediatric clinical Research Office, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands. c.gaasterland@kennisinstituut.nl., van der Weide MCJ; Pediatric clinical Research Office, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands., Roes KCB; Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands., van der Lee JH; Pediatric clinical Research Office, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands.

Publikováno v: BMC medical research methodology [BMC Med Res Methodol] 2019 Dec 04; Vol. 19 (1), pp. 227. Date of Electronic Publication: 2019 Dec 04.

The POWER-tool: Recommendations for involving patient representatives in choosing relevant outcome measures during rare disease clinical trial design.

Autor: Gaasterland CMW; Pediatric Clinical Research Office, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, the Netherlands. Electronic address: c.m.gaasterland@amc.uva.nl., Jansen-van der Weide MC; Pediatric Clinical Research Office, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, the Netherlands., Vroom E; Duchenne Parent Project, Veenendaal, the Netherlands., Leeson-Beevers K; Alstrom Syndrome UK, Torquay, Devon, UK., Kaatee M; PSC Patients Europe., Kaczmarek R; Laboratory of Glycoconjugate Immunochemistry, Hirszfeld Institute of Immunology and Experimental Therapy, Polish Academy of Sciences, Wroclaw, Poland; Polish Hemophilia Society, Warsaw, Poland., Bartels B; Child Development and Exercise Center, Wilhelmina Children's Hospital, University Medical Center Utrecht, the Netherlands., van der Pol WL; Brain Center Rudolf Magnus, Department of Neurology, University Medical Center Utrecht, Utrecht, the Netherlands., Roes KCB; Julius Center, University Medical Center Utrecht, Utrecht, the Netherlands., van der Lee JH; Pediatric Clinical Research Office, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, the Netherlands.

Publikováno v: Health policy (Amsterdam, Netherlands) [Health Policy] 2018 Dec; Vol. 122 (12), pp. 1287-1294. Date of Electronic Publication: 2018 Sep 21.