Blue Cone Monochromacy Patient Registry
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Mission
This BCM Registry® is an online Patient Registry dedicated to a rare genetic retinal disease, Blue Cone Monochromacy. The Registry was created by BCM Families Foundation, a 501(c)(3) non-profit patient-led organization with the mission to cure BCM.
Purpose
The Purpose of the Registry is to collect data over time from patients with BCM from all over the world. The Registry aims to increase knowledge about:
- Clinical features of BCM;
- Natural course of BCM;
- Long-term outcomes of BCM;
- And ultimately help find a cure for BCM.
Inclusion Criteria
Adults and children with BCM may participate in the BCM Registry. You must have genetic confirmation of BCM. During registration, you have to upload your genetic test report.
Privacy and Security
Your privacy is very important to us. We are a patient organization, created by families affected by BCM, and we know that the privacy and security of your personal data are extremely important.
Your/your child's data will not be disclosed to third parties; only BCMFF, your doctor, and select BCM researchers will have access to your/your child's data. You may decide at any time to limit access to your/your child's data to only BCMFF and your/your child's own doctor. If you change your mind and want to completely remove your/your child's data from the Registry, you can do so without any explanation.
Enrollment
The BCM Registry is patient-powered. You enroll yourself or your child and select the name of your doctor, who will check and validate all medical data.
Self-Registration
Please enroll yourself or your child by clicking on the ‘Register now’ button and following a few easy steps:
- Identification via an emailed link;
- Give informed consent(s);
- Enter personal data;
- Upload genetic test report;
- Select your doctor.
Validation
After the enrollment process, your data will be validated by the BCM Registry Manager and by your selected doctor. Then you will receive either an acceptance email or a request for more information from the Registry Manager. At any time you may contact the Registry Manager at: registry.manager@bcmfamilies.org.
Links
- More information about the BCM Registry Manager
- Frequently Asked Questions
- BCM Families Foundation
Project supported with the Otto per Mille funds of Chiesa Valdese
Understanding your participation
If you are a person who has been diagnosed with Blue Cone Monochromacy (BCM), we invite you to be a Patient in the BCM Registry.
However, before you enter personal information into the BCM Registry, please carefully read these Terms and Conditions which explain what is involved and what will be done with the information you provide.
Privacy Notice
BCM Families Foundation
Online Registry Privacy Notice
Welcome to BCM Registry! Your privacy is very important to us. This online registry Privacy Notice applies to (i) information about you/your child that you provide BCM Families Foundation (“BCMFF” “we,” or “us”) when you join the BCM Registry (the “BCM Registry” or the “Registry”) or otherwise submit patient health information to the Registry. The purpose of the Registry is to collect and compile certain demographic, health, genetic, and other relevant information about persons (hereafter referred to as “Participants”) with BCM (“Blue Cone Monochromacy”).