MetaPROM - Patient Reported Outcomes in Children with Rare Metabolic Diseases
Publications
Bösch, F., Landolt, M. A., Baumgartner, M. R., Zeltner, N., Kölker, S., Gleich, F., ... & Huemer, M. (2021). Health‐related quality of life in paediatric patients with intoxication‐type inborn errors of metabolism: Analysis of an international data set. Journal of Inherited Metabolic Disease, 44(1), 215-225.
Morrison, T., Bösch, F., Landolt, M. A., Kožich, V., Huemer, M., & Morris, A. A. M. (2021). Homocystinuria patient and caregiver survey: experiences of diagnosis and patient satisfaction. Orphanet journal of rare diseases, 16(1), 1-12.
Talks
Bösch, F., Landolt, M.A., Baumgartner M.R., , Zeltner N., Kölker, S., Garbade, S., Burlina, A., Cazzorla, C., Packman, W., Schwartz, I.V., Neto, E.V., Martinelli, D., Olivieri, G., Huemer, M. (24. Oktober 2019). Health Related Quality of Life in Paediatric Intoxication Type Errors of Metabolism: Analyses of an International Dataset. 9th FZK/CRC Retreat, Children’s Research Center at the University Children’s Hospital Zurich, Zurich, Switzerland.
Posters
Bösch, F., Landolt, M.A., Baumgartner M.R., Zeltner N., Huemer, M. (2019, Juli). Developing a Core Outcome Set for Paediatric Patients with Intoxication-Type Inborn Errors of Metabolism – International Delphi Consensus about Relevant Patient Reported Outcomes.Poster presented at „radiz Rare Diseases Summer School 2019”, Ittingen, Switzerland.
Curriculum vitae
Education
01.2019 to present:University Children’s Hospital Zurich, PhD studies, Chair of Child and Adolescent Health Psychology / Division of Metabolism (Prof. Markus Landolt, Prof. Dr. Martina Huemer)
2019:University of Zurich, Master of Science in Clinical and Health Psychology
2015:University of Zurich, Bachelor of Science in Psychology, major: Psychology, minor: Law
Professional experience
01.2016-06.2018: Psychological staff member; Institute for Forensic Psychology (IFB), Bern, Switzerland
08.2015-12.2015: Institute for Forensic Psychology (IFB), Bern, Switzerland, internship clinical psychology