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The increase in awareness on mitochondrial disease and the fact that more centres of excellence for mitochondrial disease arise also means that more and more research studies are undertaken. Studies focussing on ultimately finding a therapy/drug for treatment (cure) but also studies focussing on management of the disease in daily life (care). IMP believes both focus points are important to patients and their families.

Although the information on ongoing research studies is mostly in technical, medical language it is worthwhile paying attention to. And patients often wonder what is going on in the world with respect to research studies.

With respect to finding a therapy, or different therapies for different types of mitochondrial disease, it is important to realise that the whole development process takes many years. Yet, it is hopeful to see how many researchers are involved and dedicated to improve the lives of mitochondrial patients, and ultimately to find a therapy for mitochondrial disease.

One of the IMP members, The Lily Foundation, has an excellent overview in understandable language of the most promising studies at the moment:

https://www.thelilyfoundation.org.uk/mitochondrial-research-issues/what-research-going-world

There are also a number of general information websites, listing ongoing clinical trials in the world. For a good search on these websites it is advisable to narrow down the search to "mitochondrial disease". In these lists you will also see the current status of the trials (recruiting, ongoing, ended, prematurely ended, terminated, failed, etc.)

The EU clinical trials register: https://www.clinicaltrialsregister.eu/ctr-search/search

The US National Library of Medicine list (international):  https://clinicaltrials.gov/

Breaking news on outcomes of research studies or clinical trials will be reported directly on this website under 'news'. An example of this is the recent news on the first promising results of the phase II clinical trials with the KH176 drug by Khondrion on the 22nd of November last.

You may contact IMP for questions on specific studies or on the drug development process in general. IMP has direct communication lines with many researchers, institutes and medical authorities. Please do not hesitate to contact us.

 

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