MED13L Foundation
Patient Registry & Genetic Report Submission
This form registers your family with the MED13L Foundation and allows you to securely submit a genetic report. All information is stored securely and accessed only by authorized Foundation staff.
Secure & HIPAA-Compliant Submission
1
About You
2
Location
3
Patient Info
4
Research
5
Consent & Upload
About You
Please provide your contact information. This is the person completing the form.
Please enter your first name.
Please enter your last name.
Please enter a valid email address.
Please enter your phone number.
Please select your relationship.
Spouse Information
Location
Your address helps us understand the geographic reach of the MED13L community.
Please enter your street address.
Please enter your city.
Please select your country.
MED13L Patient Information
Please provide information about the individual with MED13L Syndrome.
Please enter the patient’s first name.
Please enter the patient’s last name.
Please enter a valid date (MM/DD/YYYY).
Please enter a valid diagnosis date (MM/DD/YYYY).
Please select a gender.
Please select number of siblings.
Geneticist Information
Research & Registry
Help us connect your family’s data to the broader MED13L research community.
What is a Research CRID?
A CRID (Common Research ID) is a free, de-identified tracking number that allows your data to be linked across research studies without ever revealing your identity. It keeps your personal details fully private while making your contribution to research more impactful. Create your free CRID at thecrid.org →
Optional, but encouraged. No CRID yet? Create one free at thecrid.org.
Please select an option.
Please select an option.
Consent & File Submission
Please review the authorization below. Uploading a genetic report is optional — you can complete registration without one.
You must agree to the privacy policy to proceed.
PDF format only, max 10 MB. If you have multiple files, combine them into one PDF first.
Click to upload or drag & drop
PDF only · Max 10 MB
You can submit this form without a genetic report and upload one later.
Something went wrong while submitting. Please try again or contact us at info@med13l.org.
Thank You for Registering!
Your information has been securely submitted to the MED13L Foundation. We will be in touch if we have any questions. To reach us directly, email info@med13l.org.
