Establish AGO patient registry & natural history study

AGO1/2 Natural History Study by Prof. Lessel

What is a Natural History Study?

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

Why does it matter?

With this study, 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!!

Join the study

This is THE most important thing you can do today to help your child.

A high level of patient participation is essential to get a representative picture. Every single patient experience counts. 

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.

Join the study

The questionnaire is currently available in English, German, Spanish and Italian. Please use e.g. deepl.com to translate it into other languages and contact Dr. Ielesicheva in case of doubt.

Confused? Additional questions?

Please reach out to Dr. Ielesicheva or us!