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.
**Due to the ongoing Covid-19 situation, recruitment to the studies indicated below has been suspended but will re-commence once 'normal service' is resumed.
UK studies and consultations that are currently looking for patient involvement:
Swallowing Difficulties Survey - open until 26th July 2020
Mito Ataxia Study - Recruitment suspended**
AIMM (Acipimox in Mitochondrial Myopathy) Study - Recruitment suspended**
PROSPER 2B - Recruitment complete
Reneo Primary Mitochondrial Myopathy Trial - Recruitment complete
PREFER project – Open in early 2020
Nicotinamide Riboside Study - Open and looking for 9 patients with single deletions or m.3243A>G mutation as at April 2019
Previous UK studies include:
CONCORD: Coordinated Care of Rare Diseases Study - Closed
National Conversation on Rare Diseases Survey - Closed
Mitochondrial Disease PSP Survey - Closed
Preventing Mitochondrial Disease - HFEA PGD consultation - Closed
Consultation on idebenone for LHON - Closed
MELAS and Stroke-like Episodes Survey - 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
