Tinnitus researchers in a COST Action improved the genetic work and research on this common condition and helped to raise awareness of it by establishing a Tinnitus Awareness Week. Other results include two Marie Curie training networks – the first-ever graduate funding programmes on tinnitus – and a finalist position for a Frontiers Spotlight Award.
Winfried Schlee, doctor of neuropsychology at the University of Regensburg, Germany, was coordinator of ‘Better Understanding the Heterogeneity of Tinnitus to Improve and Develop New Treatments’ (TINNET). He says that before TINNET, the research landscape for tinnitus was fragmented. “There was not much collaboration and it was hard to compare different studies.”
Tinnitus is a common but complex condition that afflicts 1 in 10 people, including 70 million Europeans. Sufferers hear sounds despite no external noise. One problem is what researchers call the disorder’s ‘heterogeneity’: symptoms can vary from a high-pitched whistle to a roar inside the head.
Its causes are also hard to pinpoint. “An important thing for us was to help the general public understand what Tinnitus is,” says Schlee. “There are many different types. If I’m a tinnitus patient and my friend has found a successful treatment, his treatment might not work for me.”
Researchers from 30 countries came together to establish TINNET. After the network’s creation, Schlee saw improved communication between researchers, and between researchers and their patients.
“We had travel funding within TINNET that allowed patient organisations to come to researcher meetings,” he says. “That allowed very good collaboration between researchers and patients, which matters a lot.”
One result of that collaboration was the creation of an annual Tinnitus Awareness Week that promotes a better understanding of tinnitus and its causes. “This year, it was even bigger than in 2018,” Schlee says.
During the Tinnitus Awareness Week, and as part of the dissemination of its final results, TINNET released a series of animated videos on YouTube for the general public, explaining the condition, its causes and possible treatments.
Strength in numbers
Another outcome of TINNET was the establishment of two Marie Skłodowska-Curie Actions training networks, which Schlee says are the “world’s first graduate training programmes” on tinnitus. In total, EUR 7.7 million was used by these networks to fund 30 PhD students.
“There was no structured education for tinnitus researchers before,” Schlee says. “Currently, there are roughly 300 tinnitus researchers worldwide. When these students graduate, that number will grow by 10 %.”
The network was a finalist in the 2018 Frontiers Spotlight Award, an annual prize given to outstanding article collections focused on specific research topics. TINNET also led to 80 published articles by 332 authors on the condition and its symptoms.
Furthermore, it helped to reveal that the condition might have a strong genetic component. “Before this Action, there was not much genetic research on tinnitus,” says Schlee. “Just by bringing researchers into one group, we now have several publications on a genetic link.”
He cautions that such research is in its initial stages. “We cannot say we have developed a treatment, but we have come up with standardised methods and procedures that will help us in the future.”
Schlee is grateful for the Action and the enthusiasm that the TINNET network has inspired. He also says that although the project has ended, researchers continue to collaborate.