MSCA-DN PhD in quality of life & resilience in leukodystrophy (Tübingen, GE)
POLARIS doctoral network
POLARIS is a European Marie Skłodowska-Curie Doctoral Network focused on accelerating therapy development for leukodystrophies: rare genetic disorders affecting the brain's white matter. The network aims to strengthen the full translational pathway from disease mechanisms and model development to preclinical therapy testing, clinical readiness and patient-informed treatment priorities.
To achieve this, POLARIS brings together expertise in leukodystrophy biology, advanced disease models, therapeutic innovation, biomarker development, clinical translation, patient engagement, and the ethical, regulatory and health-economic aspects of therapy development. The network will train a cohort of doctoral candidates in an international and interdisciplinary environment, combining academic research, industry-based preclinical development, secondments, network-wide training and transferable-skills development.
PhD project
For this position, the recruiting organisation is the University Hospital Tübingen (Eberhard Karls University of Tübingen), Germany. You will be embedded in the POLARIS consortium and work with experts in leukodystrophy, paediatric neurology, developmental psychopathology, resilience research and digital quality-of-life assessment.
Leukodystrophies can have a profound and long-lasting impact on patients and their families. Yet current quality-of-life measures do not adequately capture the experiences of people with these rare diseases, particularly those who are severely affected or unable to communicate verbally. This project aims to address this gap and improve our understanding of what matters to patients and families throughout the course of the disease.
The project has three connected research areas:
- Quality of life: evaluating existing quality-of-life measures and developing and validating a tool for patients and families across the lifespan, using qualitative research, consensus methods and quantitative validation in an international cohort.
- Risk and resilience: identifying factors associated with parental distress, coping and resilience, drawing on developmental and psychological research.
- Long-term outcomes: investigating how these factors relate to quality of life, treatment experiences and family coping over time, with the aim of identifying ways to strengthen resilience.
A specific focus will be on families of children who are diagnosed before symptoms appear, for example through newborn screening, family screening or genetic testing. These families may face uncertainty about when symptoms will develop and difficult decisions about treatment. Understanding their experiences and support needs is important for developing patient-centred screening, monitoring and treatment pathways.
Depending on your background and interests, the project can place greater emphasis on quality-of-life measurement or on risk and resilience research. You will develop your focus together with the research team.
Planned secondments at the University of Oulu and the Anna Freud Centre will provide experience in digital quality-of-life assessment and psychosocial research. You will also engage with the European Leukodystrophy Association and other patient organisations to better understand the priorities of patients and families.
The position is based in Tübingen, Germany, with academic enrolment through the Eberhard Karls University of Tübingen. You will pursue a PhD in a relevant discipline.
You will independently contribute to the design and implementation of a multi-site, international research project. Your work will include qualitative and quantitative research, development and validation of quality-of-life measures, analysis of risk and resilience factors, and longitudinal research into patient and family outcomes.
You will collaborate with clinicians, psychologists, methodologists, patient representatives and researchers across the POLARIS consortium. Through the planned secondments, you will gain experience in digital quality-of-life assessment, psychosocial research and patient engagement.
We deliberately welcome candidates from a range of academic backgrounds. You have:
- a Master's degree or equivalent qualifying degree, including a medical degree, in psychology, medicine, health or nursing sciences, public health, rehabilitation sciences, epidemiology, or a related field in the social, behavioural or biomedical sciences;
- a solid foundation in empirical research methods and applied statistics;
- an interest in measuring subjective and patient-reported outcomes;
- good analytical, organisational and academic writing skills;
- the ability to work independently while collaborating effectively with people from different professional and academic backgrounds;
- proficiency in English, both written and spoken.
Depending on your chosen research focus, experience with questionnaire or instrument development, psychometrics, longitudinal or multilevel modelling, qualitative or mixed-methods research, or consensus methods such as Delphi would be an advantage. Working knowledge of R, SPSS or Stata is expected. Experience working with children, families or people with chronic or rare diseases is also an advantage.
The project involves contact with patients and families who may be in vulnerable or emotionally demanding situations. Empathy, sensitivity, discretion and a reflective approach are therefore important.
We value different academic backgrounds, perspectives and experiences. If you meet the essential requirements and are motivated to develop your expertise in this field, we encourage you to apply.
Eligibility criteria
Important, strict eligibility criteria according to MARIE SKLODOWSKA CURIE programs apply to applicants:
- You must not already hold a doctoral degree.
- At the time of the application deadline, you must have a Master's degree and must not have resided or carried out your main activity (work, studies, etc.) in Germany for more than 12 months in the three years prior to the contract start date.
- You will participate in the network-wide training programme of POLARIS, which includes (international) training activities and planned secondments with POLARIS partner organizations throughout the EU.
A full-time, 3-year employment contract with the University Hospital Tübingen;
Salary, mobility allowance and benefits according to the applicable MSCA Doctoral Network and host-organisation rules;
Embedding in the international POLARIS doctoral training network;
Access to network-wide training activities, secondments and transferable-skills development;
A challenging and translational research project at the interface of patient-centred outcomes research, rare disease and clinical translation, with a direct route from methodological work to clinical and regulatory relevance;
A collaborative and entrepreneurial working environment;
An open and supportive team culture with opportunities for scientific and professional development.
The University Hospital Tübingen and the Medical Faculty of the Eberhard Karls University of Tübingen form one of Germany's leading academic medical centres, combining specialised patient care, advanced diagnostics and translational research.
The leukodystrophy programme covers paediatric and adult neurology and is closely connected to European clinical networks and registries, including the leukodystrophy disease group of the European Reference Network for Rare Neurological Diseases (ERN-RND). The programme is also involved in European consensus and guideline development, newborn screening initiatives and international clinical trials of gene and cell therapies.
You will work at the intersection of paediatric and adult neurology, clinical and developmental psychology and patient-centred outcomes research. You will have access to well-characterised patient and family cohorts, national and European registries, expert networks and collaborations with patient organisations. You will also have access to the neuroscience campus and the internationally recognised Graduate Training Centre of Neuroscience.
You will also be part of the international POLARIS doctoral network. You will work with researchers from different scientific disciplines and collaborate with academic and industry partners across Europe. Through secondments, network-wide training and transferable-skills development, you will build experience beyond your own research project and develop an international research network.
POLARIS is committed to open, transparent and merit-based recruitment. We value diversity and welcome candidates with different backgrounds, perspectives and experiences.
The application deadline is 5 October 2026. We aim to select the final candidate in October/November 2026.
Applicants may, where appropriate and in line with the recruitment procedure, also be considered for other POLARIS doctoral candidate positions that better match their profile and interests. You can highlight up to two additional POLARIS projects of interest in your application letter. This does not replace your application to the primary position, but helps the consortium identify potential alternative matches where relevant.
Would you like to know more about this PhD position? For substantive information about the vacancy, please contact prof dr Samuel Groeschel, via samuel.groeschel@med.uni-tuebingen.de.
Acquisition in response to this vacancy will not be considered.
