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Research Registry

You're one click away from the Center for Rare Childhood Disorders (C4RCD) Research Registry page.

By completing the C4RCD Research Registry page you give the C4RCD, which is a part of the Translational Genomics Research Institute (TGen), permission to contact you with more information related to research, and research participation.

It is important to know that you are not enrolling in a research study at this time; you are enrolling into a registry database. If/when you become eligible for a research study, we will ask you to sign a consent form that outlines in detail the nature of the research study, including any potential risks and benefits.

Your Privacy Matters

Because we value your participation and want to respect your privacy, access to the database is limited to C4RCD coordinators and registry administrators, who will provide you with specific research information if/when you qualify, and contact you when new research opportunities become available.

By clicking continue, you acknowledge that you have read and understood the above statement.

 If you are a parent or legal guardian filling this form out on behalf of a child or disabled young adult, all the information we are seeking on this form is related to the patient/participant.

Confidentiality

Your contact information will go directly to the Registry Administrator at TGen. TGen strictly adheres to established confidentiality procedures that are intended to protect the identity of research participants. The Registry will not disclose personal information to any non-C4RCD organizations. All data samples will be coded with a unique identifier while at TGen. All contact information is protected at all times.

If you would like to contact the Registry Administrator, please email c4rcdregistry@tgen.org.