The RUDY Study

The RUDY Study: Your experiences can help shape the future of FOP research

What is RUDY?

RUDY is a research study led by Professor Kassim Javaid and his team at the University of Oxford. It brings together people living with rare diseases, their families, doctors and researchers to improve our understanding of rare conditions and develop better tests and treatments.

FOP is one of the rarest genetic conditions known to medicine. By sharing our experiences, we can help researchers build a clearer picture of how FOP affects individuals and families throughout their lives.

FOP Friends is collaborating with the RUDY Study to help ensure that the experiences of our community are represented in research.

Why is this research important?

Every person living with FOP has their own story. The condition can affect people in different ways, and understanding these differences is essential to improving care.

RUDY collects information directly from participants about their health, symptoms, quality of life and everyday experiences. This helps researchers understand:

* How FOP affects people at different stages of life.

* How symptoms and their impact vary between individuals.

* The effect of FOP on families and carers.

* Where further research could improve care and treatment.

* The more people who take part, the more valuable this information becomes.

What does taking part involve?

RUDY uses a secure online platform to collect information. Participants can complete questionnaires and record information about their health and experiences over time.

Taking part is designed to be flexible. You can choose which parts of the study you participate in and how the research team contacts you. You can also change your preferences or withdraw from the study.

Parents and carers can register on behalf of children, and family members may also be eligible to participate.

Who can take part?

RUDY is expanding to include people living with all rare diseases. People with rare conditions, their blood relatives and partners may be eligible. Carers of someone living with FOP can also register and take part.

If you are unsure whether you or a family member can take part, the RUDY team can answer your questions.

How do I register?

Visit the RUDY website to read more about the study, review the participant information and register.

Visit the RUDY Study website

You can also contact the research team:

Email: admin@rudystudy.org

Your experiences matter. By taking part, you can help researchers better understand FOP and contribute to knowledge that may improve the lives of future generations.