Health
Hochschule Hof has developed an app on rare diseases
Researchers at Hof University have developed an app to collect data and information about rare diseases. photo
© Soeren Stache/dpa
Around four million people in Germany suffer from rare diseases. Researchers at Hof University have developed an app that aims to expand knowledge about the diseases.
A research group at Hof University has developed an app for recording rare diseases. The research project “SelEe – Rare Diseases” should increase the visibility for these diseases, said the Upper Franconian educational institution.
Around 8,000 rare diseases are known to date, and there are around four million people affected nationwide. A disease is considered rare if fewer than five in 10,000 people are affected.
New knowledge about rare diseases
The research project aims to create new knowledge about rare diseases. It is important for the developers to involve the sick themselves. “Because it is often the case that those affected by rare diseases are very well informed, sometimes even better than their family doctor,” said research group leader Professor Jörg Scheidt from the Institute for Information Systems at Hof University. “And that’s why their knowledge is very important to us. Overall, knowledge about rare diseases is very heterogeneous, and we want to create clarity here.”
In addition to those affected, their relatives and self-help groups should also benefit from the app. Ten members of self-help groups helped develop the application as a core research team, said Scheidt. Some of these are leaders of the groups, including doctors with great expertise. But mothers of children who suffer from rare diseases are also there.
According to the developers, health data such as weight, blood pressure, heart rate or sleep quality are initially stored in the app in the form of a calendar. Those affected or their relatives could enter their data regularly on a daily or monthly basis for evaluation by medical professionals. The members of the self-help groups could also give tips on what those affected need to watch out for. You can also watch explanatory videos in the app.
Number of users will grow
So far, only around 30 patients have been saved in the system, said Professor Scheidt. However, one is optimistic that the number of users will soon grow – similar to the German Headache and Migraine Register, which has now grown to 8,000 participants.
According to the Federal Ministry of Health, every fourth disease known worldwide is considered rare. One of the most common and well-known rare diseases is mucoviscidosis, also known as cystic fibrosis. Around 8000 people in Germany suffered from it.
However, a rare disease can only affect a few hundred people or fewer in a country. An extreme example of this is progeria, a disease that accelerates the aging process in the body and makes children old: only about 200 children worldwide suffer from it.