The Lily Foundation are a key link between families and scientists.
Researchers from all around the world work closely with us, telling us about their research plans, asking for our research priorities, and our input into their study design. Because of this relationship, we are able to ensure our Lily Families are aware of relevant study recruitment so they have the first opportunity to be involved if they wish.
UK studies and consultations that are currently looking for patient involvement:
PREFER project – Open until December 2019
MELAS and Stroke-like Episodes Survey - Open until 21st February 2019
Nicotinamide Riboside Study - Open and looking for 9 patients as at Sept 2018
Biomarker Study - Open and looking for 12 patients as at Sept 2018
Previous UK studies include:
Preventing Mitochondrial Disease - Patient voice for HFEA PGD consultation - Closed
Emergency Hospital Admissions, Severe Seizures Survey - Closed
Emergency Hospital Admissions, Stroke Like Episodes Survey - Closed
Ethical Consideration in Management of Children with Mito - Closed
The ART in Family - Closed
