Queen Square Centre for Neuromuscular Diseases


Reproductive decision making (Mitochondrial disease).

Sponsor Newcastle Upon Tyne NHS Foundation Trust
funder MRC
CI Professor Doug Turnbull
Contact details julia.maddison@ncl.ac.uk
More information


With advances in reproductive techniques, mitochondrial patients now have to consider more options. There is currently no published research on how mitochondrial patients make these decisions, and how they would like this complex information presented to them.

Primary objectives

To investigate experiences of reproductive decision-making of women with mitochondrial disease.

This study will explore:

  • women's experiences of living with a diagnosis of Mitochondrial Disease
  • women's knowledge about risk of transmission to their children, genetic testing and reproductive techniques
  • the impact of health professionals, family and other information sources on decision-making
  • women's information needs