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
