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 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: [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.
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.
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. >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 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 moreA series of free, web-based videos from ASH to supplement education in benign hematology for fellows.
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 moreA 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.
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 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 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.