CoRDs
Registering for the CoRDS Study:
The Coordination of Rare Diseases at Sanford (CoRDS) is a global rare disease registry that collects essential patient data to help researchers better understand rare conditions like Beta-Mannosidosis and other lysosomal storage disorders. By registering with CoRDS, individuals contribute valuable information that can lead to advancements in research, improved treatments, and ultimately, a cure.
How to Register
- Visit the CoRDS Website – Go to the CoRDS registry at https://cords.sanfordresearch.org/activation-form to begin the registration process.
- Select Participant Type – Choose whether you are enrolling yourself, enrolling a child under 18, or enrolling an adult who cannot complete the process themselves.
- Provide Participant Information – Enter the participant’s name, date of birth, and language preferences.
- Choose Enrollment Method – Select whether you prefer to complete enrollment online or via postal mail. Enter and confirm your email address.
- Add Diagnosis Information – Search for and select the rare disease diagnosis. If the participant is undiagnosed, enter “Undiagnosed.” If the participant is a carrier of a condition, check the appropriate box.
- Review and Sign the Consent Form – Read the informed consent document carefully. Check the agreement box to confirm your understanding and consent to participate in the registry.
- Submit Your Registration – Click the “Submit” button to complete the activation form. You will receive an email confirmation once your registration is processed.
- Update Your Information Regularly – Return periodically to update your information. Keeping the registry current ensures that researchers have access to the most accurate data.
Why Your Participation Matters
The Coordination of Rare Diseases at Sanford (CoRDS) is a global rare disease registry that collects essential patient data to help researchers better understand rare conditions like Beta-Mannosidosis and other lysosomal storage disorders. By registering with CoRDS, individuals contribute valuable information that can lead to advancements in research, improved treatments, and ultimately, a cure.
