For Patients

Frequently asked questions and ways to connect.

How can I participate in the registry?

If you are interested in participating in the iGO Registry, please talk to your physician. If he or she is not an iGO Registry member yet, we are happy to help him/her to become a member.

Your physician will inform you about the data collection process and your rights as a patient. 

How can I become active?

The data collected in the registry is collected to improve knowledge and care of patients with genetic obesity syndromes. If  you would like to be more actively involved, for example to contribute your ideas for new projects or to strengthen the patient voice, please reach out to your physician or the current patient representative in the board or another board member.

Frequently Asked Questions

The data in the registry is pseudynomized. Identifying data and medical data are stored on different servers to comply with data protection regulations. Only your treating physician can see your identifying data (e.g. name). If your data is being used for a data analysis project, the researcher can only see a pseudonym, no name or other identifying data.

Your data might be used for research projects where researchers and physicians want to learn more about genetic obesity. Therefore the registry is very valuable as it collects data of a very rare disease. This makes research possible.

You can ask for accessing your own data at any time. If you would like to do so, please contact your treating physician.

You can revoke your consent to the processing of your data and your participation in the registry at any time! You can also decide what should happen with your data after withdrawal.

In this case, please contact your treating physician.