If you are interested in enrolling in the CoRDS Registry, please complete the brief screening form below and click submit. Please note CoRDS is a patient reported registry. If you are a Healthcare provider and wish to refer your patients, please refer them to this form.Please answer a few questions to help us create your participant account.
Please provide your basic information. If you plan to register more than one participant, you will need to complete a separate screening form for each profile.
Please provide your child’s basic information. If you plan to register more than one participant, you will need to complete a separate screening form for each profile.
Please provide the participant’s basic information. If you plan to register more than one participant, you will need to complete a separate screening form for each profile.
Red asterisk (*) indicates a required field.
Uncheck this box if you do not have a middle name
Legal Given name of the participant at birth(as per birth certificate).
DO NOT INCLUDE STATE or COUNTRY
As the participant's LAR, you will be our primary contact. Please provide your own information in this section.
As the participant's Parent/Guardian, you will be our primary contact. Please provide your own information in this section.
Instructions: To add a disease begin typing the name of the disease. When it appears, select the disease and click the right arrow button to add it to the Selected Disease(s) table. You may add multiple diseases. To remove a disease, select the disease in the Selected Disease(s) table and click on the left arrow button.If you are not able to identify the participant’s diagnosis in the “Rare Disease Diagnosis” field below, please select “Other” and enter the diagnosis in “Specify Other Rare Disease Diagnosis”.If the participant has not received a diagnosis, but has consulted a doctor and/or experiences medically unexplainable symptoms, please search “Undiagnosed” to continue.If the participant is not affected by a rare disease (displays no signs/symptoms) and carries the gene for a rare disease, please select “Unaffected Carrier”.
Note: Before submitting this form, please confirm that all contact information is correct.After you submit this form:Please note, you are not enrolled in the CoRDS registry until you login to the secure online portal and complete the CoRDS permission and data sharing questions.If you requested mail-based enrollment, CoRDS personnel will send the forms necessary to enroll to the address indicated on the screening form.If you have any questions about CoRDS, please contact CoRDS personnel at firstname.lastname@example.org or 1 (877) 658-9192.