Blue Cone Monochromacy Registry

Registry Manager

The Registry Manager coordinates and manages the operations of the BCM Registry and contributes to its development and implementation. Among his/her responsibilities, the Registry Manager acts as a liaison for patients, clinicians, researchers, privacy authorities and the BCMFF Board.

Registry Manager and data quality

The Registry Manager is responsible for the quality of the data provided in the BCM Registry and periodically assesses their completeness. He/she verifies that all data are complete and accurate both during the registration process and afterwards when an enrolled patient or a clinician changes or adds new data. To this purpose, he/she may contact participants/users of the registry and request them to fill in their missing data and/or to update specific fields.

How the Registry Manager can help you

If you are a patient or a guardian, the Registry Manager can support you with compiling and providing medical related information, including those of your clinician. If your medical doctor is not listed in the Registry, you can request the Registry Manager to invite him/her to join the Registry.
Furthermore, you can ask the Registry Manager to help you design you family pedigree.

If you are a clinician who is new to the BCM Registry, your patient may want you to join it in order to validate his diagnosis and medical information. In this case, you will receive an email from the Registry Manager who, upon your approval, will guide you throughout the registration process and the subsequent validation of your patient’s medical data.

If you are a researcher who is interested in accessing the registry data and submitting a research proposal, you can contact the Registry Manager in order to gather information about the policies and timing for project submission and evaluation or to get the data once you project is approved.

In all cases, may you have any doubts concerning your participation in the Registry or may you need any additional information that is not found in the FAQs section, please contact the Registry Manager at

The Registry Manager and your privacy

The Registry Manager oversees the Registry and assesses the privacy protection and security systems. He/she is responsible of verifying that all the uploaded medical records are anonymized (i.e. all your personal data are removed from the documents stored in the Registry).

How to contact the Registry Manager

If you have any doubts concerning your participation in the Registry or if you need any additional information, please contact the Registry Manager at