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"Children/Adults with WAGR Syndrome Advocating for the WAGR Syndrome Patient Registry"
It is a collection of standardized information about individuals diagnosed with WAGR syndrome, Aniridia, and/or 11p deletions. The Registry is designed to collect and organize data that will help researchers to better characterize and understand the numerous conditions associated with WAGR syndrome, and to potentially develop effective treatments and therapies. Partipication is free and involves completing a questionnaire.
Researchers can use the registry to:
Patients can use the registry to:
CoRDS is an acronym for “Coordination of Rare Diseases at Sanford.” Based at Sanford Research, a not-for-profit research institution, CoRDS is a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll and for researchers to access.
CoRDS manages the online platform for the WAGR Syndrome Patient Registry, and provides assistance for patient enrollment and researcher inquiries.
CoRDS (Coordination of Rare Diseases at Sanford) Registry presonnel will have access to the information you provide. The information you provide is stored securely and no unauthorized individuals can access any information about your enrollment. Your information will be “de-identified.” This means your data will be identified by a unique code, not by your/your child’s name.
You may choose to share your de-identified information with the International WAGR Syndrome Association Registry Team, or with researchers, or both. You may also choose to be contacted by researchers who are planning a research study or clinical trial. Only researchers who have been approved by their own local ethics committee and by the CoRDS (Coordination of Rare Diseases at Sanford) Internal Review Board (IRD) are permitted to do this. You may decline to be contacted by researchers.
To ensure registry data is accurate and current, it should be updated annually. The CoRDS/IWSA WAGR Syndrome Patient Registry will contact participants once a year to record changes and/or add new presentations/diagnoses. It is also important to inform the registry about any major changes that occur between updates, including change of address, a new diagnosis, or surgery.
Registries are intended as a public service for the benefit of patients living with a particular condition. Participants will not receive any payment or other financial benefit as a result of submitting data to the registry. The results of research facilitated by the registry may be patentable or may have commercial potential. However, you will not receive patent rights and will not receive financial benefits from future commercial development. Nevertheless, there may be other benefits to participating, including
Participation in the registry is voluntary. Participants may access their data to rectify or withdraw it at any time, without explanation. To withdraw from the Registry, contact CoRDS by telephone at 877-658-9192 or at firstname.lastname@example.org
For additional information, contact Kelly Trout, BSN, RN, Health Consultant, IWSA Patient Registry Coordinator at Kelly.email@example.com