Web Resources
Federal Agencies
Centers for Disease Control and Prevention
http://www.cdc.gov/ncbddd/sicklecell/facts.html
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov/health/health-topics/topics/sca
Office of Minority Health
https://minorityhealth.hhs.gov/sicklecell
Sickle Cell Disease Toolkit: Social Media & Outreach Resources
(in English and Spanish)
Federal Initiatives
- Registry and Surveillance System for Hemoglobinopathies
http://www.cdc.gov/ncbddd/hemoglobinopathies/rush.html - Public Health Research, Epidemiology, & Surveillance for Hemoglobinopathies
http://www.cdc.gov/ncbddd/hemoglobinopathies/phresh.html - Healthy People 2020
https://www.healthypeople.gov/2020/topics-objectives/topic/blood-disorders-and-blood-safety/objectives - Cure Sickle Cell Initiative:
https://www.nhlbi.nih.gov/science/cure-sickle-cell-initiative - National Academy of Science, Medicine, and Engineering: Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action
http://www.nationalacademies.org/hmd/Activities/SelectPops/AddressingSickleCellDisease/2019-FEB-21.aspx - Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Report to Congress
https://www.nichq.org/resource/2017-2021-sickle-cell-disease-treatment-demonstration-regional-collaboratives-program
Providers
1. American Society of Hematology
American Society of Hematology’s Benign Hematology Curriculum (BHC) is a series of free, web-based videos designed to supplement education in benign hematology for fellows and other clinicians who wish to learn more about the disorder. Each course focuses on a different benign hematology topic, with the goal of providing fellows with an educational resource that might not be available locally.
Click here for online courses.
2. UCSF Standard of Care Guidelines for Patients with Sickle Cell Disease
Genetics Collaborators
- Western States Regional Genetics Collaborative
http://www.westernstatesgenetics.org/ - Mountain States Genetics Regional Collaborative
http://msgrcc.org/index.html
Coordinating Center
- ABT Associates
https://www.abtassociates.com/ - National Institute for Children’s Health Quality
http://www.nichq.org/ - SCDTDP Congressional Report
http://sicklecell.nichq.org/resources/scdtdp-congressional-report
