The CHM International Patient Registry is a “hands on” way for you to help researchers as they seek a cure for Choroideremia.
The Choroideremia Research Foundation (CRF) is urging all CHM affected individuals, carriers and non affected siblings around the globe to register with MyRetinaTracker. This effort will enhance CHM research and therapy development by gathering CHM patient data in one secure central location, creating a powerful reference tool for current & future research projects and clinical trial enrollment.
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How does it work?
Qualified researchers will search the database and identify the Registry ID numbers of people matching their needs. No identifying information will be available to the researcher or study sponsor. The MRT staff will then inform that participant on how to contact the researcher or study sponsor if they are interested in the study or clinical trial. Participant names will never be given to researchers directly. All participants are assigned a unique Registry ID. Only the MRT Registry staff will have the ability to link a person’s Registry ID to their name. The registry administrator will only do this when it is important to communicate with the MRT participant.
We need to have at least 1,000 registrants by year end 2014 and 3,000 by year end 2015. Lofty goals perhaps, but it is that important. It costs nothing to register and it is a straightforward and quick process to begin your registration. You can help reach those goals by registering yourself and spreading the word to your extended family and others who are affected by CHM about the importance of registering.
You can start your registration today and then return as many times as necessary to complete and update.
Why are registries so important for Rare Disease patients?
It has been demonstrated that Patient Registries are a major determinant for successful translational research in the field of Rare Disease. Where well-implemented registries and active patient organizations exist, the likelihood for developing a treatment for the disease in question is increased. Furthermore, the consistent longitudinal collection of patient data facilitates the creation of standards of care and dramatically improves patient outcomes even in the absence of new therapies. These compelling arguments for Rare Disease Patient Registries as indispensable infrastructure tools for translating basic and clinical research into therapeutic solutions have elevated their status to a major priority for all stakeholders, making them a building block of any sound policy on Rare Disease. Patient Registries should be recognized as a global priority in the field of Rare Diseases.