Goutaki Myrofora, Prof, MD-PhD

I am an MD, MSc, and PhD-trained clinical epidemiologist with a research focus on paediatric and rare respiratory diseases and their life course. I am currently an Associate Professor in Epidemiology at ISPM, where I lead the Rare Disease research team.

I have extensive experience on setting up, leading, and analysing large datasets from clinical cohort studies and developing patient-reported outcome measures and questionnaires related to the rare disease primary ciliary dyskinesia (PCD) but also common paediatric diseases such as school-age asthma.  I currently lead the Ear-Nose-Throat (ENT) Prospective International Cohort of patients with PCD (EPIC-PCD), the largest prospective cohort study in the field of PCD and a large project on social and mental health within the Living with PCD study an international participatory cohort collecting patient-reported and medical information directly from patients or parents. I co-lead the Swiss PCD registry (CH- PCD), one of the few existing national registries on PCD and am the scientific coordinator of the Swiss Rare Disease Registry (SRDR), hosted at ISPM Bern and a senior member of the Swiss Paediatric Airway Cohort (SPAC), a nationwide clinical cohort studying common paediatric respiratory conditions, since its inception. Through my research activities I have developed a large national and international network of collaborators and since 2020 I co-chair the international network BEAT-PCD which consists of more than 1000 researchers, clinicians, healthcare professionals, and patient partners interested in PCD.

My research expanded by leading several studies using qualitative and mixed methods approaches, which enabled me to develop my communication skills and gain more in-depth experience into the perspectives of people with lived experiences. I have also developed extensive hands-on expertise in public and patient involvement and engagement (PPIE) strategies by working closely with support group representatives and patient partners since several years for own led research projects but also within the BEAT-PCD clinical research collaboration. I have contributed to the development of several clinical practice guidelines, developing experience on the methodology of assessing the certainty in evidence and the strength of recommendations in healthcare. I am committed in teaching and promotion of young researchers. I contribute to undergraduate teaching at the medical faculty at the University of Bern as well as postgraduate teaching (Public Health Science Program Bern, Master of Public Health, several Certificate of Advanced Studies) and I am participating to the Mentoring4Women program of the medical faculty.