We are very pleased to be able to partner with over 40 PAGs to set up and maintain rare disease patient registries.PAGs are often the essential ingredient to a successful registry, as they have strong relationships with researchers, providers, and of course, patients and their families. We value our partnerships and do our very best to meet their needs to ensure a successful collaboration. Below are some examples of benefits provided to PAGs that partner with CoRDS to start a registry:
There is no cost to a Participant to enroll in CoRDS. There is no cost to Researchers to access information in CoRDS. There is no cost to PAGs to partner with CoRDS to establish or maintain a patient registry.
By working with CoRDS, a PAG has all of the benefits of establishing a registry for its disease of interest. CoRDS provides a mechanism by which data can be collected securely under an IRB-approved study, which can be made available to researchers who are studying rare diseases. PAGs have the ability to access data for non-research purposes, but do not have to worry about any of the administrative oversight. Through CoRDS the following services are provided to the PAG, free of charge.
Privacy and Security
The CoRDS registry utilizes Velos, a Commercial Off-The-Shelf (COTS) software, to provide a secure and cost-effective solution for the CoRDS patient registry. The Velos software is CFR 21, part 11 compliant and provides the mechanism to securely collect, modify, display, and report participant information.
Questionnaire & Data Collection
PAGs may use a general CoRDS questionnaire or they can create a questionnaire for their specific disease of interest. CoRDS staff is available to provide support as PAGs develop their disease-specific questionnaire.
The CoRDS questionnaire incorporates the required Common Data Elements (CDEs) recommended by the NIH Office of Rare Disease Research. CDEs help ensure that data across all rare disease registries are defined in the same way, using the same standards, and the same vocabularies. This helps facilitate harmonization as well as analyses and studies within a specific disease, and across multiple diseases.
Access to Data
PAGs that refer their membership to the CoRDS registry may also benefit from data stored in CoRDS. While CoRDS was initially established to provide a resource for researchers with IRB approval, a process has been developed to allow PAGs to access information for non-research purposes, such as education of the organization’s members; publication of the benefits of Registry participation; or use of demographic and statistical data to support grant proposals. If CoRDS participants authorize CoRDS personnel to share their information with the Partner Organization that referred them, CoRDS can provide the Partner Organization with that information. The Partner Organization signs a contract indicating they will only use the information for non-research purposes.
Input in the Review Process
CoRDS has a Scientific Advisory Board that reviews researcher applications. When a researcher applies for access to a disease-specific registry, CoRDS will notify the PAG to let them know of the application and will send them a summary of the research to approve.