First patient interviewed in PREFER neuromuscular disorder case study


February 21 marks an important milestone for the PREFER project: The first patient interview in our neuromuscular disorders case study! This is a clinical patient preference study asking patients and caregivers what they think about different treatments.

The clinical case study is led by Newcastle University with the help of Muscular Dystrophy UK. The study will focus on myotonic dystrophy type 1 and mitochondrial disease. We will ask what adult patients and their caregivers think about both real and hypothetical treatments to find out what trade-offs they are willing to make.

The study is done in two parts: First, we do a qualitative study with a series of interviews and focus groups (starting now and going on until April 2019). This is followed by a quantitative online survey (planned for September – December 2019).

By Josepine Fernow

Last modified: 2021-11-10