For Patients
How can I participate in the registry?
If you are interested in participating in the ECLip Registry, please talk to your physician. If he or she is not an ECLip 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. Only your treating physician can see your complete data set in the registry.
You can revoke your consent to the processing of your data at any time!
In this case, please contact your treating physician.
How can I become more active in the ECLip Registry?
The data collected in the registry is collected to improve knowledge and care of patients with lipodystrophy – so also for you. If your physician is already entering your data and you would like to be more actively involved, for example because you have an idea for data evalutation please reach out to your physician or the current patient representative in the board.
If you would like to be more permanently active don’t hesitate to get into contact with your patient representative.
FAQ
Who can see my data in the registry?
The data in the registry is pseudynomized. Identifying data and medical data are stored on different servers to comply with the data protection concept. Only your treating physician can see your data. If your data is being used for a data analysis project, the researcher can only see a pseudonym, no name or other identifying data.
Is it possible to see personal information in the system?
Only your treating physician can see your personal information.
What is my data used for?
Your data might be used for research projects where researchers and physicians want to learn more about lipodystrophy. Therefore the registry is very valuable as it collects data of a very rare disease. This makes research possible.
Can I see my own data?
You can ask for accessing your own data at any time. If you would like to do so, please contact your treating physician.
