You would like to share your data on non-HFE hemochromatosis patients and be part of our continous effort to improve clinical management of iron overload disorders?
Please contact us: Contact
The available funding for this project will be shared across all participants and you will be named as a co-author on the publication composed with your data.
Funding shall be paid to the parties upon fulfillment of project milestones as follows:
- Milestone 1 – ethical approval for participation in the non-HFE registry from the local ethics research committee of the participating institution.
- Milestone 2 – entry of the minimal dataset (sex, age at diagnosis, serum iron parameters [serum iron, ferritin, transferrin, saturation – at diagnosis and at last follow up] mutation & gene [HGMD nomenclature], date of last follow up and status [alive or dead] and treatment [phlebotomy, chelation or no treatment]) for individual patient.
Achievement of milestone 1 should be funded with € 500,00 per institution.
Achievement of milestone 2 should be funded with € 100,00 per patient.
Ethical approval from your local ethics committee is needed before starting data entry into the registry. We will aid you as much as possible to ease this task.
You can find templates for ethical approval here for download.
Please send us a scanned copy of your ethical approval.
Furthermore, a signed consortium agreement is required. Please download the form and send us a scanned copy (firstname.lastname@example.org).
As soon as ethical approval is available and the consortium agreement is signed you will receive payment for achieving milestone 1 and we will provide login information for the data entry webpage.