Privacy Policy

Last updated: 09 September 205

The Florida Sickle Cell Disease Registry (“Registry,” “we,” “our,” or “us”) is committed to protecting the privacy and confidentiality of individuals who participate in the registry. This Privacy Policy explains how we collect, use, and protect the information you provide when you choose to participate in the Florida Sickle Cell Disease Registry.

1. Information We Collect

We may collect the following information when you participate in the registry:

  • Personal Information (such as name, date of birth, address, phone number, and email).
  • Health Information related to sickle cell disease or sickle cell trait.
  • Demographic Information (such as age, gender, and race/ethnicity).
  • Medical and Clinical Data provided by healthcare professionals or linked through public health programs.

2. How We Use Your Information

Your information may be used to:

  • Support research that improves treatments and healthcare for people living with sickle cell disease.
  • Provide educational resources to patients, families, and healthcare providers.
  • Track the prevalence and impact of sickle cell disease in Florida.
  • Guide policies, funding, and advocacy efforts to improve sickle cell care.
  • Contact you with information, updates, or educational materials (only if you consent).

3. Sharing of Information

We value your privacy and only share your information as permitted by law. Information may be shared with:

  • Authorized public health programs, as required by Florida Statute Section 383.147.
  • Approved researchers working on sickle cell disease studies.
  • Healthcare providers involved in your care.
  • We will not sell, trade, or rent your personal information to third parties.

4. Data Protection

We take reasonable steps to protect your information through:

  • Secure servers and encryption.
  • Limited access by authorized personnel only.
  • Compliance with applicable federal and state privacy laws, including HIPAA (Health Insurance Portability and Accountability Act), when applicable.

5. Your Choices

  • Participation in the registry is voluntary.
  • You have the right to opt out at any time by contacting the Florida Newborn Screening Follow-up Program at:

6. Contact Us

If you have questions about this Privacy Policy or how your information is used, please contact:

Email: [email protected]

Phone: 844-446-5744