Patients document their symptoms (SAMS-Pat)

Patients with rare diseases (RD) often experience a years-long odyssey through the healthcare system before their disease is even correctly diagnosed. In addition, research into RD is hampered by a lack of data. SAMS-Pat, an app for the systematic documentation of symptoms and diagnoses of RD, aims to alleviate this problem.

To make SAMS-Pat not only useful but also easy to use, researchers at the Berlin Institute of Health (BIH) have been working closely with patients with rare diseases and their families from the start. This close cooperation allows future users of the app to work with developers to make decisions about the features and interface of SAMS-Pat. At the same time, all participants ensure that the app meets their expectations and needs.

We document our activities under Project Updates (only in German).

The Patient Advisory Board is open to new members who themselves have a rare disease or who are caregivers for someone with a rare disease. Please feel free to contact us at SAMS-Pat@bih-charite.de.