Navigating sickle cell disease (SCD) cab 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 advocates, 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.
Managing SCD is a lifelong journey, and the right resources can make all the difference. Here are some of the 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:
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: screeningoptout@flhealth.gov
Phone Number: 833-956-0324
(The opt-out form is available online for those who need to submit electronically.) Learn more about the program.
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.
The Florida Department of Children & Families partners with Medicaid to ensure access to essential healthcare services for individuals with SCD. Learn about Medicaid support.
Sunshine Health offers community-based resources for individuals with SCD, including care coordination, transportation, and wellness programs. Explore resources.
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.
This nonprofit offers advocacy, education, and support services tailored to individuals and families affected by SCD.
Learn more about SCDAF.An online platform offering educational materials, community forums, and support for individuals living with SCD.
Explore Sickle Cell Connect.This program supports adolescents and young adults with SCD, offering tailored resources and peer support.
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 (FSCDR) provides comprehensive care coordination, annual symposia, and wrap-around services to support individuals with SCD and their families.
Learn more about FSCDR.Humana offers care management services for members with SCD, connecting them with care managers and additional resources.
Learn about Humana’s SCD support.Offers resources, support, and community programs for individuals living with SCD in South Florida.
Visit the Miami Chapter website.Focuses on advancing research and providing support to families affected by SCD in the St. Petersburg area.
Learn more about Sickle Cell St. Pete.The American College of Emergency Physicians (ACEP) offers tools to help individuals create personalized emergency care plans for managing SCD crises.
Access ACEP’s toolkitIn 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 SCD. The recommendations address treatment of both adult and pediatric SCD.
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 moreASH 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 moreThe 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 morePfizer’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 moreThe 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 moreThe 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 moreThe 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 moreA series of free, web-based videos from ASH to supplement education in benign hematology for fellows.
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.
Participation in clinical trials is crucial for advancing treatment options and improving outcomes for individuals with SCD. Physicians play a key role in identifying eligible patients, providing them with accurate information, and facilitating access to cutting-edge therapies. Below are trusted resources that offer up-to-date information on ongoing clinical trials, eligibility criteria, and participation guidelines for both healthcare providers and patients.
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 moreThe 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 moreCureSCi 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 moreA 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 moreThe 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 moreThe Foundation for Sickle Cell Disease Research (FSCDR) Practice & Research Centers are dedicated to advancing sickle cell disease treatment through innovative research while providing comprehensive care to patients across Florida. These centers serve as both medical hubs for individuals living with sickle cell disease and research sites conducting clinical trials to improve treatment options and health outcomes.
2520 NW 75th Street, Frederica Wilson / Juanita Mann Health Center Miami, FL 33147
For more information or to schedule an appointment, please visit the FSCDR Contact Us page.
For more information or assistance, please contact us:
For opt-out information, contact Florida NBS Follow-up Program.