Be Part of the Change: Your Role in Advancing Sickle Cell Treatments
If you or your child have sickle cell disease or carry the sickle cell trait, you can help make a difference.
About the Florida Sickle Cell Disease Registry
The Florida Sickle Cell Disease Registry collects valuable information about sickle cell disease and the sickle cell trait. This helps healthcare teams, patients, and families make informed health choices and support ongoing research. The registry was established under Section 383.147 of the Florida Statute, to improve the lives of those impacted by sickle cell disease.
Why Join a Sickle Cell Registry?
- Educational Resources: You will receive resources to learn more about your disorder.
- Better Care: Registries collect important information that helps doctors and researchers understand how the disease progresses, find the best treatments, and improve care for people with sickle cell disease.
- Support Research: A registry is a key tool for research. It helps in studying treatments and how sickle cell affects health.
- Track the Disease: Registries help us count how many people have sickle cell, who is affected, and how the disease impacts different groups.
- Advocate for Change: The data from registries can be used to push for better policies, more funding, and improved healthcare services for those with sickle cell.
How Does My Participation Help?
By joining the registry, you help provide a clearer picture of what it’s like to live with sickle cell disease or the sickle cell trait. Your participation helps experts:
- Understand how sickle cell affects daily life.
- Guide research and healthcare to meet your needs.
- Make changes in policies and resources for better sickle cell care.
Questions About The Registry?
FSCDR Registrar
Contact Person: Sickle Cell Registrar
Email: [email protected]
Phone Number: 844-446-5744
Florida Newborn Screening
For opt-out information, Contact Florida Newborn Screening Follow-up Program
Email: [email protected]
Phone Number: 833-956-0324
https://floridanewbornscreening.com/parents/floridas-sickle-cell-registry/. (The opt-out form is available online for those who need to submit electronically.)