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: 

Red Light Ptosis Study - Not yet open to recruitment

R-PROMS Study - Recruiting now

ORION Study - Recruiting now

Neuropsychiatric and Brain Imaging of Primary Mitochondrial Diseases - Recruiting now

EXPLORE study - Recruiting now

REaLMS - Red Light in Mitochondrial disease Study - Recruiting now

COGSTATE Study - Recruiting now

STRIDE AHEAD Study - Recruiting by invitation

TRANSFORM Study - Recruiting now

ION-PROM Study - Recruiting now

Mito Ataxia Study - Recruiting now

Generate Your Muscle (GYM) Study - Recruiting now in the Netherlands

FALCON Study - Active, not currently recruiting

NuPOWER (SPIMD-301) Study - Active, recruitment complete

Previous UK studies include:

Mitox Study - Study closed

KHENEREXT Study - Study closed

STRIDE Study - Recruitment complete

Exploring Patient and Family Experiences of Diagnosis in Mitochondrial Disease - Recruitment complete

MIT-E Study - Study closed

Nicotinamide Riboside Study - Study closed

KHENERGIZE Study - Study closed

Vestibular Dysfunction in Mitochondrial Disease Study - Study closed

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