Online mito info all in one place
Our directory is aimed at saving you time searching the internet. We welcome any additions or feedback.
Please be aware that we can’t vouch for the content of the sites we find, and all descriptions are taken from those sites.
www.thelilyfoundation.org.uk/lily-research/research-funded-date
Improving lives today, saving lives tomorrow. Supporting medical research into mitochondrial disease is a fundamental aspect of our work, not only because it could potentially lead to a cure but also because it helps to improve lives now. Lily-funded research projects have already resulted in faster, less invasive patient diagnosis and helped families affected by mitochondrial illness to have healthy babies. Several promising avenues for new treatments are also currently being explored.
www.thelilyfoundation.org.uk/find-support/UK-mito-patient-registry
The UK Mito Patient Registry (UKMPR) is a powerful tool that brings real benefits to the mito community, and gives patients a voice in research and care provision. By signing up, you will be helping the search for effective treatments and a cure for mito.
Please sign up for your personal Lily Account. Once your account has been created you will then be able to access the UK Mito Patient Registry via your personal dashboard.
www.thelilyfoundation.org.uk/lily-research/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.
Rudy is a study in Rare diseases. Headed up by a research team at the University of Oxford, Rudy aims to transform clinical care for participants through patient driven research.
www.mitopatients.org/research/general
This site contains an excellent research-focused section covering mito research in general, research publications, the IMP Scientific Committee, studies around the world and more.
The mitochondrial disease community’s “privacy assured” registry is the best chance we have to collect information that will facilitate the diagnosis and treatment of mitochondrial disease, as well as to discover ways to manage the symptoms and improve the quality of life of those individuals who are already affected by it. We need you to participate by providing and sharing the information that will enable the development of treatments and cures for mitochondrial disease.
Genomics England was set up in July 2013 as a company fully owned by the UK Department of Health to deliver the 100,000 Genomes Project.
In October 2018, the Health Secretary Matt Hancock announced the expansion of the 100,000 Genomes Project to see 1 million whole genomes sequenced by the NHS and UK Biobank in five years and an ambitious vision for genomic medicine in the NHS – with plans to sequence 5 million genomes over the next five years.
MyGene2 is a portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers. The genetic cause of most rare conditions is unknown and as a result, most families who undergo exome sequencing or whole genome sequencing do not receive a diagnosis. By sharing information through MyGene2, a family can help and even participate in the discovery of new genetic conditions and the genes underlying these conditions.
www.clinicaltrialsregister.eu/ctr-search/search
The EU Clinical Trials Register contains information on interventional clinical trials on medicines conducted in the European Union (EU), or the European Economic Area (EEA) which started after 1 May 2004.
Clinical trials conducted outside the EU/EEA are included if:
The Register also provides information about older paediatric trials covered by an EU marketing authorisation.
ClinicalTrials.gov is a Web-based resource that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The Web site is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH). Information on ClinicalTrials.gov is provided and updated by the sponsor or principal investigator of the clinical study. Studies are generally submitted to the Web site (that is, registered) when they begin, and the information on the site is updated throughout the study. In some cases, results of the study are submitted after the study ends. This Web site and database of clinical studies is commonly referred to as a “registry and results database.”
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