R.A.R.E.G.E.N.E.
The Survey
The R.A.R.E.G.E.N.E project is powered by collecting patients' demographics and their reported outcomes using a tool called REDCap. We use this data to study how their demographics (e.g. age, race, income, etc.) impact their outcomes. All collected information is deidentified and is not shared outside of the study team. To learn more about our research team click here
Getting Started
Consent
Before you can fill out the survey. You will be asked to sign a consent form. This will provide more information about the R.A.R.E.G.E.N.E. project
Check your email! We will use the email that you give us during the consent process to send you to invite links to take the survey(s). We will occasionally send follow-up surveys so be sure to check your email regularly
Genetic Testing
Genetic testing is not required to be a part of this project. If you would like to participate in genetic testing or would like to submit your genetic testing results to us. You may do so by clicking the link below!
Support us
Staying Up to Date
After you have completed the survey(s). Be sure to follow us on all of our social media sites as we will be posting updates that happen in the field as well as within our team.
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Thank you so much for supporting the R.A.R.E.G.E.N.E project.
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if you would like to donate to our genetic testing fund please click the link below:
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