How to Join

• Follow the link to register on the secure SanfilippoLINK Portal website.
• Informed Consent Form: Carefully read the Informed Consent form before agreeing to participate in SanfilippoLINK. This document contains detailed information on how information in SanfilippoLINK will be collected, stored, and used for research. If you consent to participate, you can electronically sign the consent document and proceed to the first SanfilippoLINK survey. If you've already signed the consent form and set up your account, you can log in directly to SanfilippoLINK.
• Provide a unique Clinical Research Identifier (CRID code) to link all your data together in a private, non-identifiable manner. After generating your CRID code, return to SanfilippoLINK to enter your code and proceed to the next survey.
• Complete remaining online surveys covering topics such as general information, demographics, diagnosis, communication preferences, clinical research participation, medical history, symptoms, etc.
• Upload test reports and other documents. You have the option to securely-link medical records (U.S.) for a more complete picture.
• Come back regularly to use the helpful Tools (personalized symptom tracking, provider locator, medication lists) and update your information.

Please contact us with any questions.