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PhD Position in patient-centred decision-making for rare diseases

  • //applyindex.com/wp-content/uploads/2021/11/belgium.png Belgium
  • University/Institute Name KU Leuven
  • Attendance Type On Campus (Full Time)
  • Position Funding Type Research Assistantship (RA)
  • Application deadlineExpired
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Position Details (PhD Research Project)

The Clinical Pharmacology and Pharmacotherapy unit at KU Leuven and UZ Leuven invites applications for a full-time PhD position within the INFORM-RD project: “A patient-informed clinical platform to inform patient-centred decision-making for rare diseases.” This interdisciplinary project is part of the KU Leuven Institute on Rare Diseases, Leuven.IRD.
Patients with rare diseases face many challenges: diagnosis takes on average 5 years, for most rare diseases no curative treatment is available, and many barriers exist for patients to access optimal support. To inform research, policy and healthcare decision-making on how to overcome these challenges, better data on health-related unmet needs in rare diseases is needed. Through this project, you can contribute to the collection of this data and promote its integration into decision making, such that a tangible difference in the lives of these patients can be created.
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Project

Key Areas of Work
Ethical and Legal Framework & Patient Engagement
You will develop an ELSI (ethical, legal, societal implications) toolkit and patient engagement guidelines through literature reviews, stakeholder focus groups, and co-creation workshops. The goal is to ensure ethical and inclusive data collection for rare disease research.
Questionnaire Validation, distribution and analysis
You will adapt and validate a cross-disease questionnaire to capture patient-reported unmet needs, ensuring it is inclusive, user-friendly, and suitable for digital and low-literacy contexts. This includes testing with patients and integrating it into clinical systems. You will develop methods to (digitally) distribute the questionnaire (together with UZ Leuven) and collect and analyse the results.
Policy Translation & Decision Support
You will help turn patient-reported data into actionable tools and guidelines for research, reimbursement, and care optimization, working closely with HTA bodies, regulators, and clinicians to ensure practical use in healthcare decisions.
Other Responsibilities
You will:
– Be actively involved in the design, set-up, and execution of research activities, with the aim of obtaining a PhD degree.
– Conduct literature reviews, document analyses, and comparative legal reviews.
– Design, carry out, and analyse qualitative interviews, focus groups, and a Discrete Choice Experiment (DCE).
– Liaise with (international) project partners and coordinate ethics approvals.
– Draft project deliverables, scientific publications, and conference abstracts; present findings to academic and non-academic stakeholders.
– Collaborate with external stakeholders 
– Supervise and mentor students working on topics related to your research

Profile

– Master in pharmaceutical sciences, drug development, biomedical sciences, medicine, bioengineering, law, bioethicssocial sciences with outspoken interest in regulatory sciences. Candidates with a Master’s degree in another field may apply if they can demonstrate their expertise and interest in the fields related to the projects
– You have affinity with data and statistical analysis (e.g. R)
– You will engage yourself with enthusiasm and perseverance to a research project. 
– You are ambitious, dynamic, flexible and take an open attitude towards problems and evolutions. 
– You are directed towards innovation and patient access. 
– You are able to work independently and take decisions. 
– You have excellent social and communication skills to deal with all stakeholders in this field. 
– You are able to work in an international multidisciplinary team and cooperate with other team members. 
– You have good written and oral knowledge of English and Dutch and preferably also French. 
– You have good didactic skills and you can coach and motivate other persons

Offer

A full-time position within a highly motivated research group with relevant experience and expertise. For this job, a contract of 1 year is offered that, after a positive evaluation, can be extended yearly to a period of 4 years.

Interested?

Your solicitation is expected before 20th July 2025. Interviews take place between July 21 and July 30th, or scheduled according to the availabilities of the applicant.
To apply and/or receive more information, please contact Prof. Dr. Isabelle Huys: [email protected] or Prof. dr. Marion Delcroix ([email protected]).

KU Leuven strives for an inclusive, respectful and socially safe environment. We embrace diversity among individuals and groups as an asset. Open dialogue and differences in perspective are essential for an ambitious research and educational environment. In our commitment to equal opportunity, we recognize the consequences of historical inequalities. We do not accept any form of discrimination based on, but not limited to, gender identity and expression, sexual orientation, age, ethnic or national background, skin colour, religious and philosophical diversity, neurodivergence, employment disability, health, or socioeconomic status. For questions about accessibility or support offered, we are happy to assist you at this email address.

Research Areas & Fields of Study involved in the position

Bioengineering Biomedicine Clinical Sciences Health Science

Position Start Date

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