PhD Position: Developing Core Outcome Sets for Epidermolysis Bullosa

Join a dynamic international team and help accelerate drug development for patients with epidermolysis bullosa!

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 and 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.

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.

Working environment

You will work at the Department of Dermatology of the UMCG, which hosts an internationally recognized EB expertise center.

You can expect:

• Participation in a research group of experienced clinicians, researchers, and outcome measurement specialists.
• Being part of an international, multidisciplinary research consortium with regular meetings both digitally and in-person, around the world.
• Intensive collaboration with patients and patient organizations.
• Strong connections between clinical practice, patient perspectives, and research.
• Opportunities for international networking and collaboration at the forefront of EB research.

What are we looking for

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.

What do we offer

• Initially a 1-year contract, which will be extended for the remainder of the period upon positive evaluation.
• A position in which international networking, collaboration, pace setting, event organization, and communication are essential.
• Opportunities to gain scientific (clinimetric/outcome measures), organizational (project management), and patient communication skills.
• Additionally, the UMCG offers an 8% holiday allowance, an 8.3% year-end bonus. The conditions of employment comply with the Collective Labour Agreement for Medical Centres (CAO-UMC).