UK Trials & Research Studies

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: 

ION-PROM Study - Recruiting now

MIT-E Study - Recruiting now

KHENERGIZE Study - Recruiting now

STRIDE Study - Recruiting now

Mitox Study - Recruiting now

Vestibular Dysfunction in Mitochondrial Disease Study - Recruiting now

Mito Ataxia Study - Recruiting now

Nicotinamide Riboside Study - Recruiting now

Previous UK studies include:

AIMM (Acipimox in Mitochondrial Myopathy) Study - Study closed

CoIN Study - Recruitment complete

Mito COVID-19 Study - Study closed

Abliva KL1333 Study - Recruitment complete

Gene Editing Perspectives Study - Closed

PREFER project – Closed

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