As part of the COSEB project, you'll be at the forefront of standardizing outcome measurement in EB research. Work with passionate clinicians, researchers and EB patient advocates across continents, and gain invaluable experience in clinimetric methods and patient-centered research.
What will you do?
Epidermolysis bullosa (EB) is a rare genetic skin blistering disorder that significantly impacts patients' quality of life. Despite ongoing research and drug development efforts, no cure or effective treatment currently exists. The lack of standardized en patient-centered outcome measurement hinders progress in evaluating treatments and improving patient care. This PhD project aims to address that.
Within the international project "Core Outcome Sets for Epidermolysis Bullosa (COSEB)", you will focus on the development and implementation of core outcome sets for EB. The project brings together an international consortium of clinicians, researchers, patients, and other stakeholders to improve outcome measurement, expedite drug development, and ultimately enhance outcomes for people living with EB. For more information, please see: https://www.c3outcomes.org/coseb
Your PhD trajectory will focus on:
- Organizing and analyzing Delphi consensus processes to reach agreement on core outcome domains.
- Conducting reviews and surveys related to outcome measurement in EB (e.g., measurement instrument quality).
- Involvement in qualitative studies (interviews) to incorporate the patient voice.
- Creation of patient-friendly information materials and aid in setting up a consortium website containing an outcome measurement toolbox.
- Writing and publishing scientific publications.
- Presenting findings at scientific conferences and COSEB update meetings.
- Coordinating and taking part in meetings within COSEB steering committee and working groups and maintaining oversight of tasks and progress.
The project will involve clinimetric methods, qualitative research approaches (interviews, thematic analysis), Delphi methodology, and consensus techniques in close collaboration with patients and other stakeholders.
We are looking for a candidate who:
- Holds a master's degree in (bio)medical sciences, psychology, or a related discipline. Candidates with another master's degree but affinity with dermatology and clinical research will also be considered.
- Has strong communication, collaboration and project management skills.
- Functions well independently as well as in a team within an international context.
- Has knowledge of, and preferably experience with, outcome measurement research and/or clinimetric approaches.
- Is interested in dermatology, rare diseases, patient-centered outcome research, and ideally blistering diseases including epidermolysis bullosa.
- Fluency in English, both written and verbal. Knowledge of Dutch is advantageous but not required.
- Is favourably based in Groningen or surroundings, but working remotely can be discussed.
