The search for a cure for mitochondrial disorders is of the essence. Nobody will deny this.
However, we all know that scientific developments take time and the process of approval of drugs is a lengthy one. And even when a drug/cure is on the market, it is likely that not all mitochondrial patients will benefit from it. Mitochondrial disease concerns a group of complex, hetergenous disorders.
In the meantime mitochondrial patients have to live their daily lives. Therefore, the quality of life and the concurring carepaths require our full attention. It is for this reason that IMP initiated a full study into the quality of life of mitochondrial patients. If we know and understand the daily situation of patients and have analysed the most important complaints which affect the quality of life, we can stimulate the research into developing good carepaths with proper therapies. In the end we wish that patients can be in control of their daily lives and be empowered in such a way that they can manage their own situation.
To this end IMP has asked a renowned German health research institute to start a quality of life study in Germany. The study started a few years ago, aiming at adult (16+) patients with different types of mitochondrial disease. All adult patients with a confirmed diagnosis could participate. The study was funded by the German DGM, the patient organisation for muscular disease, and member of IMP. Approximately 100 patients took part. These patients were asked to complete questionnaires, which was an enormous job and took quite some time. IMP is really thankful to these patients!
The German study is now finished. The institute is working on the final analyses and wishes to officially publish the results. This will come soon and we will keep you informed.
The study is now having a follow-up with a full quality of life study in The Netherlands, at the Radboud UMC in Nijmegen. The study will hook up to the German one but will focus on different other aspects. This Dutch study will concentrate on the quality of life of 8-18 year olds, and aims at developing intervention tools so that patients can deal with the main complaints themselves. The study is called POWERME and started in September this year. It is funded by the Dutch Prinses Beatrix Spierfonds, which is an independent fund for research studies into muscular disease.
Both studies have drawn international interest. The researchers in Germany and The Netherlands are willing to share their methods and views with others. Interest has been shown from Canada and the USA.
