FSC Dr Resources

Facilitating Collaboration and Networking for Healthcare Professionals

What is Sickle Cell Disease?

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels carrying oxygen to all parts of the body. In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a "sickle". Sickle cells die early, which causes a constant shortage of red blood cells. Sickle cells can get stuck in small blood vessels and block the flow of blood and oxygen to organs in the body. These blockages cause repeated episodes of severe pain, organ damage, serious infections, or even stroke.

What Causes Sickle Cell Disease?

SCD is inherited in the same way that people get the color of their eyes, skin, and hair. A person with SCD is born with it. People cannot catch SCD from being around a person who has it. Quicks Facts on Sickle Cell Disease

Who is Impacted by Sickle Cell Disease?

  • It is estimated that SCD affects 90,000 to 100,000 people in the United States, mainly Blacks or African Americans, (Centers for Disease Control and Prevention, CDC)
  • The estimated life expectancy of those with SCD in the United States is more than 20 years shorter than the average expected. (Centers for Disease Control and Prevention, CDC)
  • The prevalence of SCD in Florida's Medicaid population is approximately twice the national average. (Florida Agency for Health Care Administration, AHCA)
  • It is estimated that Florida has approximately 13,886 individuals with SCD, making it one of the states with the highest burden of the disease. (American Society of Hematology, ASH)

Florida's Newborn Screening Program

Every newborn in Florida is screened for SCD shortly after birth, ensuring early diagnosis and access to care. This program is a vital first step in addressing SCD. You can also contact Florida’s Newborn Screening Program for access forms for different options.

For opt-out information, contact Florida Newborn Screening Follow-up Program.

Email: [email protected]

Phone Number: 833-956-0324

(The opt-out form is available online for those who need to submit electronically.) Learn more about the program.

What to Expect From Your Baby's First Test

Understanding newborn screening is crucial. Learn what to expect from your baby's first test, how results are communicated, and what steps to take if additional testing is needed. Get more information.

Department of Children & Families – Medicaid Partner

The Florida Department of Children & Families partners with Medicaid to ensure access to essential healthcare services for individuals with SCD. Learn about Medicaid support.

Community Resources – Sunshine Health

Sunshine Health offers community-based resources for individuals with SCD, including care coordination, transportation, and wellness programs. Explore resources.

Sickle Cell Disease Association of Florida (SCDAF)

This nonprofit offers advocacy, education, and support services tailored to individuals and families affected by SCD.

Learn more about SCDAF.

Sickle Cell Connect

An online platform offering educational materials, community forums, and support for individuals living with SCD.

Explore Sickle Cell Connect.

UF Health’s Streetlight Program

This program supports adolescents and young adults with SCD, offering tailored resources and peer support.

Humana Healthy Horizons in Florida

Humana offers care management services for members with SCD, connecting them with care managers and additional resources.

Learn about Humana’s SCD support.

The Foundation for Sickle Cell Disease Research

The Foundation for Sickle Cell Disease Research (FSCDR) provides comprehensive care coordination, annual symposia, and wrap-around services to support individuals with SCD and their families.

Learn more about FSCDR.

Humana Healthy Horizons in Florida

Humana offers care management services for members with SCD, connecting them with care managers and additional resources.

Learn about Humana’s SCD support.

Sickle Cell Disease Association of America – Miami Chapter

Offers resources, support, and community programs for individuals living with SCD in South Florida.

Visit the Miami Chapter website.

Sickle Cell St. Pete

Focuses on advancing research and providing support to families affected by SCD in the St. Petersburg area.

Learn more about Sickle Cell St. Pete.

Emergency Care Planning Resources

The American College of Emergency Physicians (ACEP) offers tools to help individuals create personalized emergency care plans for managing SCD crises.

Access ACEP’s toolkit

ASH SCD Pocket Guides

The American Society of Hematology (ASH) offers evidence-based pocket guides to assist practitioners in enhancing the quality of care for SCD patients. These concise guides cover various aspects of SCD management and are designed for quick reference in clinical settings.

Learn more

Consult a Colleague Program

ASH provides a Consult a Colleague service that facilitates information exchange between hematologists and their peers on topics including SCD. This program allows physicians to seek advice and insights from experienced colleagues to improve patient care.

Learn more

Sickle Cell Disease Association of America (SCDAA) Resources

The Sickle Cell Disease Association of America (SCDAA) offers a comprehensive collection of medical links, online communities, and resource directories pertinent to SCD. These resources include educational materials, support networks, and information on clinical trials, providing valuable support for both healthcare providers and patients.

Learn more

Pfizer SCD Resource Center

Pfizer’s SCD Resource Center provides guidelines, fact sheets, and directories with extensive information relevant to SCD patients, their caregivers, and healthcare providers. This platform offers up-to-date resources to aid in the effective management of SCD.

Learn more

Centers for Disease Control and Prevention (CDC) Sickle Cell Trait Toolkit

The CDC, in collaboration with ASH and SCDAA, has developed the Sickle Cell Trait Toolkit. This collection of resources aims to increase understanding of sickle cell trait among patients, families, trainers, coaches, and healthcare providers.

Learn more

American College of Emergency Physicians (ACEP) SCD Resources

The American College of Emergency Physicians (ACEP) provides a variety of resources, including podcasts, webinars, research publications, and policy guidelines, to support emergency physicians in the management of SCD. These materials are designed to improve and standardize care for SCD patients in emergency settings.

Learn more

Centers for Medicare & Medicaid Services (CMS) SCD Provider Toolkit

The Centers for Medicare & Medicaid Services (CMS) offers a toolkit intended to assist healthcare providers and care teams supporting individuals with SCD. It includes information on screening, diagnosis, treatment, and resources to support comprehensive patient care.

Learn more

American Society of Hematology (ASH) Academy On Demand

A series of free, web-based videos from ASH to supplement education in benign hematology for fellows.

ASH SCD Decision Aid for Considering Transplantation

A decision-making tool produced by ASH in partnership with the Mayo Clinic Shared Decision-Making National Resource Center to support clinicians and patients with SCD in considering stem cell transplantation.

Sickle Cell Disease Association of America (SCDAA) Clinical Trial Finder

The SCDAA offers a centralized, user-friendly Clinical Trial Finder to help individuals with SCD, their families, and caregivers locate relevant clinical trials. This tool is designed to facilitate participation in research studies aimed at developing new treatments.

Learn more

National Heart, Lung, and Blood Institute (NHLBI) SCD Research and Clinical Trials

The NHLBI provides comprehensive information on ongoing SCD research and clinical trials across the United States. This resource includes details on study objectives, eligibility criteria, and locations, supporting healthcare providers in identifying appropriate trials for their patients.

Learn more

Cure Sickle Cell Initiative (CureSCi) Clinical Trials

CureSCi collaborates with researchers nationwide to advance promising genetic therapies into clinical trials. Their platform offers insights into current studies, emphasizing innovative approaches to curing SCD through genetic interventions.

Learn more

ClinicalTrials.gov

A comprehensive database of privately and publicly funded clinical studies conducted worldwide, maintained by the U.S. National Library of Medicine. Physicians can search for SCD-specific trials using various filters to find studies pertinent to their patients.

Learn more

Genome.gov Clinical Trials Resource

The National Human Genome Research Institute provides resources for healthcare providers, including information on clinical trials related to gene therapy for SCD. This includes educational materials to aid in understanding and navigating gene therapy options.

Learn more

FSCDR Hollywood

Hollywood, FL

1685 South State Road 7, Unit 4, Hollywood, FL 33023

FSCDR Jacksonville

Jacksonville, FL

6210 Samuel Wells Dr, Unit 1201, Jacksonville, FL 32216

FSCDR Belle Glade

Belle Glade, FL

136 S Main Street, Suite B, Belle Glade, FL 33430

FSCDR Tallahassee

Tallahassee, FL

2055 Centre Point Lane, Unit B, Tallahassee, FL 32308

FSCDR Tampa

Tampa, FL

4444 E Fletcher Avenue, Unit E, Tampa, FL 33613

FSCDR Miami

Miami, FL

2520 NW 75th Street, Frederica Wilson / Juanita Mann Health Center, Miami, FL 33147

FSCDR Daytona Beach

Daytona Beach, FL

500 Health Blvd, Suite 200, Daytona Beach, FL 32114

FSCDR Fort Lauderdale

Fort Lauderdale, FL

5100 N Federal Highway, Fort Lauderdale, FL 33308

FSCDR Homestead

Homestead, FL

151 NW 11th St, Unit E204, Homestead, FL 33030

FSCDR Orlando

Orlando, FL

6388 Silver Star Rd, Suite 2G, Orlando, FL 32818

For more information or to schedule an appointment, please visit the FSCDR Contact Us page.

Questions About The Registry?

For more information or assistance, please contact us:

  • Contact Person: Sickle Cell Registrar
  • Email: [email protected]
  • Phone Number: 844-446-5744

For opt-out information, contact Florida NBS Follow-up Program.

Sign up for SCD Registry Updates