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: 

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