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Fighting mito,
finding hope.

UK trials and research studies

The Lily Foundation are a key link between families and scientists, in fact we like to think of ourselves as the bridge between the clinical and the personal.

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’re able to ensure that our Lily families always have the opportunity to be involved in any relevant study recruitment should they wish to take part.

We’ve pulled together information on all the current studies taking place into mitochondrial disease along with eligibility criteria and contact details, should you wish to find out more. It’s important to remember that by taking part in cutting-edge mitochondrial research, you could help play your part in advancing treatments and move us closer to that all-important cure.

EMERALD pilot study

Evaluating the tolerability and efficacy of a remote microphone (assisted listening device) in adult participants with mitochondrial disease

Study status:
Currently recruiting
Key criteria :
Adult patients between the ages of 16 and 70 with a genetically confirmed diagnosis of mitochondrial disease who suffer from mitochondrial disease-related hearing loss
Study site:
Newcastle
Study sponsor:
Newcastle University

Red light ptosis study

This study tests a new treatment to help with droopy eyelids (ptosis) and eye movement problems (squint) using red light.

Study status:
Currently recruiting
Key criteria :
Children aged 3 - <18years with a genetically confirmed diagnosis of mitochondrial disease and ptosis (lid-droop)
Study site:
London
Study sponsor:
UCL Institute of Opthalmology

R-PROMS study

This study aims to investigate whether online assessments can be used to measure the severity of ataxia (movement, balance and co-ordination difficulties) in adults with mitochondrial disease and Spinocerebellar Ataxia.

Study status:
Currently recruiting
Key criteria :
Adults aged over 16, with a confirmed diagnosis of mitochondrial disease OR Spinocerebellar Ataxia
Study site:
Newcastle
Study sponsor:
Newcastle University (UK) and Monash University (Australia)

ORION study: Outcomes Research in Inherited Optic Neuropathies

The aim of this study is to understand how an inherited optic neuropathy progresses over a certain time period.

Study status:
Currently recruiting
Key criteria :
Individuals must have a genetic diagnosis of an inherited optic neuropathy, aged 16 years or older, ideally with vision loss duration of 10 years or less
Study site:
Cambridge
Study sponsor:
Cambridge University Hospitals NHS Foundation Trust and The University of Cambridge

Neuropsychiatric and brain imaging of primary mitochondrial diseases

Dr Alessandro Colasanti’s research project aims to understand how the involvement of mitochondria in the brain contributes to psychological symptoms of mitochondrial disease.

Study status:
Currently recruiting
Key criteria :
Any adult with a confirmed or suspected mitochondrial disease
Study site:
Brighton
Study sponsor:
University of Sussex & University College London (UCL)

EXPLORE study

Exploring the eXperience of Patients and caregivers Living with mitOchondRial stroke-like Episodes

Study status:
Currently recruiting
Key criteria :
People with mitochondrial disease who experience Stroke-Like Episodes and people who live with, or have cared for, people who experience SLE’s
Study site:
Newcastle or online from home
Study sponsor:
Newcastle University

REaLMS – Red Light in Mitochondrial disease Study

This study will test whether exposure to a specific frequency to red light improves muscle function and mobility in patients with fatigue.

Study status:
Currently recruiting
Key criteria :
Adult patients aged between 19 and 59 years old, with a confirmed genetic mutation in their mitochondrial DNA
Study site:
Oxford
Study sponsor:
Oxford Brookes University

COGSTATE study

This is a pilot study to assess whether computerised methods of cognitive assessment correlate with traditional methods of assessment of patients with mitochondrial disease.

Study status:
Currently recruiting
Key criteria :
Adult patients aged 18+, with a confirmed genetic diagnosis of mitochondrial disease and who are willing to participate in research activity
Study site:
Newcastle
Study sponsor:
Newcastle upon Tyne NHS Foundation Trust (NuTH)

TRANSFORM study

This study tests a new treatment for focal refractory epilepsy in patients with mitochondrial disease, called transcranial direct current stimulation (or tDCS).

Study status:
Currently recruiting
Key criteria :
Participants must be aged 2 years or over, with a genetically proven mitochondrial disease, drug-resistant epilepsy and anatomically relevant changes defined by neuroimaging and/or scalp EEG
Study site:
Newcastle
Study sponsor:
Newcastle upon Tyne NHS Foundation Trust (NuTH)