If you are interested in being contacted about our research registry, please complete this mini registration form and someone from our research team will be in touch with you to discuss our research studies and complete a full registration if you are interested in participating in our Research Registry.
Click here to complete our mini registration form.
If you are a clinic or agency that is referring or promoting our Research Registry to your clients, please invite interested families to complete this form. If the family is willing, you can complete the bottom section of the form on their behalf which serves as a confirmation of diagnosis for our research purposes and saves the family from having to provide this confirmation themselves.
Complete our online registration form. This will take 5-10 minutes and requires giving your informed consent. You will also be asked about your immediate family members (names, dates of birth and diagnoses), how to contact you, and what types of studies you are interested in. If you have any questions you can call us at 1-866-273-2272 or email us at firstname.lastname@example.org.
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