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.

**Due to the ongoing Covid-19 situation, recruitment to the studies indicated below has been suspended but will re-commence once 'normal service' is resumed.

UK studies and consultations that are currently looking for patient involvement: 

CoIN Study - Open now

Mito Ataxia Study - Recruitment suspended**

AIMM (Acipimox in Mitochondrial Myopathy) Study - Recruitment suspended**

PROSPER 2B - Recruitment complete

Reneo Primary Mitochondrial Myopathy Trial - Recruitment complete

PREFER project – Open until September 2020

Nicotinamide Riboside Study - Open and looking for 9 patients with single deletions or m.3243A>G mutation as at April 2019

Previous UK studies include:

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 PGD 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