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:
Gene Editing Perspectives Study - Recruiting now
Mito COVID-19 Study - Recruiting now
Abliva KL1333 Study - Recruiting now
Vestibular Dysfunction in Mitochondrial Disease Study - Recruiting now
CoIN Study - Recruiting now
Mito Ataxia Study - Recruiting now
PREFER project – Recruiting now
Nicotinamide Riboside Study - Recruiting now
AIMM (Acipimox in Mitochondrial Myopathy) Study - Recruitment suspended**
Previous UK studies include:
PROSPER 2B - Recruitment complete
Reneo Primary Mitochondrial Myopathy Trial - Recruitment complete
Swallowing Difficulties Survey - Closed
CONCORD: Coordinated Care of Rare Diseases Study - Closed
National Conversation on Rare Diseases Survey - Closed
Mitochondrial Disease PSP Survey - Closed
Preventing Mitochondrial Disease - HFEA 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
