Establish AGO patient registry & natural history study


What is a Natural History Study?

The aim of a natural history study (NHS) is to understand the course of the disease better: 

A high level of patient participation is essential to get a representative picture. Every single patient experience counts. This is THE most important thing you can do today to help your child.

The AGO1/2 NHS is led and sponsored by Prof. Lessel at University Hospital Salzburg. If you want to take part, please email Dr. Olena Ielesicheva. She will send you the questionnaire.

The questionnaire is currently only available in English. Please use e.g. to translate it and contact Dr. Ielesicheva in case of doubt.

Why does it matter?

With an NHS, we can

The last point is crucial for rare diseases with small patient populations. It means that everyone in the study can receive the treatment, and no one receives a placebo - while still being able to measure whether the drug works!!


Do you have additional questions? Please reach out to Dr. Ielesicheva or us!