Sickle Cell Disease Resources
Navigating sickle cell disease (SCD) can be challenging, but access to the right information and support can make a difference. This page offers a variety of resources for patients, caregivers, healthcare professionals, and supporters, including educational materials, research updates, treatment options, and support networks. Whether you are looking for the latest developments or seeking community connections, these resources are here to help.
Early Detection
Managing SCD is a lifelong journey, and the right resources can make all the difference. Early detection and screening are critical for managing sickle cell disease (SCD). Here are some resources available in Florida to help individuals and families take proactive steps:
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.
Living with Sickle Cell Disease
Managing sickle cell disease (SCD) requires a multidisciplinary approach and access to evidence-based guidelines, clinical tools, and expert recommendations. Physicians play a vital role in improving patient outcomes through informed decision-making and the latest advancements in treatment. The following resources provide essential clinical guidelines, toolkits, and support materials to help healthcare providers deliver high-quality care to individuals living with SCD.
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.
Physicians
In 2016, the American Society of Hematology (ASH) initiated an effort to develop clinical practice guidelines on SCD. ASH formed a committee of medical experts, researchers, and patients to review evidence and form recommendations on care and treatment for SCD. The recommendations address treatment of both adult and pediatric SCD.
ASH SCD Pocket Guides
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.
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.
ASH Academy On Demand
A series of free, web-based videos from ASH to supplement education in benign hematology for fellows.
American College of Emergency Physicians (ACEP) SCD Resources
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.
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.
Clinical Trials
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.
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.
Research & Practice
FSCDR Hollywood (Research Site)
Hollywood, FL
1685 S. State Road 7, Unit 4, Hollywood, FL 33023
FSCDR Tallahassee
Tallahassee, FL
2056 Centre Pointe Ln, Unit B, Tallahassee, FL 32308
FSCDR Daytona Beach
Daytona Beach, FL
500 Health Boulevard, Suite 200, Daytona Beach, Florida 32114
FSCDR Belle Glade
Belle Glade, FL
941 SE 1st St, Belle Glade, FL 33430
FSCDR Orlando
Orlando, FL
6388 Silver Star Road, Suite 2G, Orlando, FL 32818
FSCDR Tampa
Tampa, FL
4444 E Fletcher Ave, Unit E, Tampa, FL 33613
FSCDR Jacksonville
Jacksonville, FL
6210 Samuel Wells Drive, Unit 1201, Jacksonville, FL 32216
FSCDR Homestead
Homestead, FL
151 NW 11 St Unit E, 204 Homestead, FL
FSCDR Fort Lauderdale
Fort Lauderdale, FL
1212 SE 1st Ave Fort Lauderdale, FL 33316
FSCDR Liberty City
Liberty City, FL
Frederica Wilson/Juanita Mann Health Center, 2520 NW 27th Ave, Miami, FL 33147
FSCDR Panama City
Panama City, FL
1328 Jenks Ave, Panama City, FL 32401
FSCDR Pensacola
Pensacola, FL
4541 N Davis Hwy, C, Pensacola, FL 32503
FSCDR Fort Pierce
Fort Pierce, FL
800 Virginia Avenue, Suites 25-26, Fort Pierce, FL 34982
FSCDR Fort Myers
Fort Myers, FL
3677 Central Ave Suite G, Fort Meyers, FL 33901
FSCDR St. Petersburg
St. Petersburg, FL
4040 49th Street North, St. Petersburg, Florida 33709
For more information or to schedule an appointment, please visit the FSCDR Contact Us page.