Researchers from Newcastle University in the UK are leading an international study known as PREFER. The study aims to explore the views of people living with mitochondrial disease (mito) regarding the risks and benefits associated with potential treatments for the disease.


The study involves a short online survey, where your insights will inform the research process of developing new medical products for mito.


To be eligible for the study, you must be:

  • diagnosed with myotonic dystrophy type 1, or with a type of mitochondrial disease
  • eighteen years old or older
  • a carer of someone that has the condition


All survey responses will remain confidential.

For any questions, you can contact the research team at