Developing new ideas together
Prof. dr. de Ridder: “At the end of 2019, there was an article in the leading scientific journal Nature that says: the best scientific progress is achieved through collaboration between scientific disciplines. You are already seeing more and more collaboration between ENT specialist, audiologist, neurologist and psychiatrist. But then you still start from health care. TinnitusHouse wants to ask the patient himself: what helps you? Then you get 'crowdknowledge', just like crowdfunding arose.”
“The idea behind TinnitusHouse is a broad collaboration between researchers, doctors, therapists and aid organizations involved in tinnitus. Participating organizations include TU Delft, Erasmus University Rotterdam, the University of Regensburg, the Braininnovations Foundation, the Tinnitusfree Foundation, the Hoormij Foundation and many individual patients and volunteers.
“In this broad collaboration, Tinnitus House tries to find answers to all questions about the origin, experience, relief and cure of tinnitus.
A special feature here is the use of data science: extracting characteristic patterns from thousands of patient data. If one or two people say they benefit from certain medicines, for example, that is not scientific proof, but if in a database of thousands of patients this shows up as something that often works, it is a starting point for a possible cure or relief.
Or, as Prof. dr. Dirk de Ridder outlines it in an interview by Stichting Hoormij:
“Tinnitus House wants to receive answers to questions such as: do you suffer from tinnitus, what complaints, in which environment, what would benefit you? This allows us to map out risk factors and solutions that have not yet been considered. Suppose a hundred people themselves indicate that – I will name just a few – carrot juice works, then that is reason for further research. Look further into what these people have in common. If there is one person in whom, so to speak, eating grass helps, then that is too little for further research. We look for common denominators so that we can then give people tips that match their type of tinnitus or environmental characteristics.”
Tinnitus Panel and Tinnitus Room
Tinnitus House is made up of a Tinnitus Panel and a Tinnitus Room. The Tinnitus Panel is a large group of people who fill out questionnaires on a regular basis.
Data is collected from these questionnaires and compared with each other. For example, questions will be about the moments or circumstances in which the disorder arose, in order to get a picture of the main causes. It will also be asked about remedies that have already been tried by patients, in order to get an idea of the general its effectiveness. We also want to get an idea of the different types of tinnitus, if they actually exist. For example, some patients hear a beep or noise, but others clearly hear voices or bird sounds. It is not clear whether these patients can all be lumped together and placed under the heading of tinnitus, or whether there are completely different syndromes.
Patterns will be derived from the answers to the questions in the questionnaires that are offered from the Tinnitus Panel, which must then be tested further. This is where the Tinnitus Room comes into play.
The Tinnitus Room is an actual, clinical room in which patients are examined and in which the most likely hypotheses can be tested. For example, if the questionnaires show that listening to classical music has a dampening effect on the tinnitus experience, this assumption can be further investigated scientifically in the Tinnitus Room, with the help of a group of patients selected for the tests.
It is intended to equip the Tinnitus Room with an extensive arsenal of devices and instruments to simulate situations that can influence the experience of tinnitus.
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