STAR Patient Contact Registry
The STAR Foundation Patient Contact Registry is an international registry hosted by Qualtrics in support of Free Sialic Acid Storage Disease (FSASD) patient outreach.
This registry collects patient and patient caregiver contact data to be used for the purpose of providing families with targeted information regarding FSASD patient community support, emerging research efforts, and treatment information. Part of this registration also asks for primary and specialty care provider contact information. This data will be used to build a database of caregivers providing support to FSASD patients around the world.
The intent is that, periodically, STAR Foundation will reach out to those care providers and facilite the exchange of knowledge to improve patient treatment outcomes across the spectrum. Please do not feel pressured to participate if you are uncomfortable. However, we urge you to participate if you can.
Every last bit of information helps in the study of rare disease. Registrant information will not be shared with anyone without your permission and is stored in a secure database.
For any questions, comments, or concerns, or if you need technical assistance, please feel free to reach out to firstname.lastname@example.org at any time.
Visit our STAR pages for information on individual families and their updates.