EFNA member association Dystonia Europe was among the winners of the Brain, Mind, and Pain Patient-Centred Innovation Grant, announced on Wednesday in Brussels. The €30,000 prize was awarded for their work on MyBrainNet, a central platform for neurological diseases, helping patients access peer-to-peer information to improve their quality of life.
MyBrainNet empowers people with neurological brain disorders by connecting them with other patients, and providing accurate and unbiased information about their disease.
The tool provides a digital diary for patients to keep track of their daily activities in relation to the disease. This has already proven to be an invaluable tool during appointments with the neurologist and other medical professionals.
Monika Benson, Executive Director at Dystonia Europe, explains how MyBrainNet will work:
‘Users can choose to share his/her data collected through the diary with the scientific community for research purposes. If a user chooses to do so, the data will anonymously be stored in a searchable database which can be used for scientific research, now and far into the future. Our aim is to retain all anonymous data for an indefinite period of time. With the growth of the amount of data this database, the usefulness of and possibilities with the information increases over time.’
‘Besides the option to fill in the diary by hand we envision the possibility to connect several types of wearable devices. These devices can automatically gather valuable information, which combined with the diary information, will provide a unique set of data invaluable to most research projects.’
The other winners of the award were ASPERGA, who are developing an auditory aid that helps people with autism block out stimuli that they are hypersensitive to, reducing their sensory pain, and Master Your Pain, an innovative, personalised e-health platform to help patients with rheumatic pain understand their symptoms and access care.
The Brain, Mind, and Pain Patient-Centred Innovation Grant is an initiative of Pain Alliance Europe, supported by Grünenthal Group, with the main aim of encouraging patient-centred innovation having, as a result, the improvement of the life conditions of pain.