For Health Care Providers: Sickle Cell Disease Resources

MDH is committed to reducing racial bias and health inequities for those living with sickle cell disease, and helping health care providers provide the best treatment possible.

Advocacy, research & support

• American Society of Hematology Sickle Cell Disease Initiative: A transformative, multi-faceted, patient-centric initiative brings stakeholders together to achieve outlined priorities. 
• Sickle Cell Transplant Advocacy & Research Alliance (STAR): A non-profit organization created by a group of pediatric hematology and stem cell transplant doctors. STAR is the only large organization with a focus on curing SCD.
• Sickle Cell Treatment & Outcomes Research in the Midwest (STORM): Brings together hematology and primary care communities to collaborate with people living with SCD and their families to improve access, delivery of care, and outcomes.
• National Alliance for Sickle Cell Centers: An organization that provides support and infrastructure assistance to increase the number of sickle cell centers available. 

Community resources

• Sickle Cell Foundation of Minnesota
• Sickle Cell Association of America

Guidelines and recommendations

• American Society of Hematology: Sickle Cell Initiative: Includes guidelines related to SCD and pain management resources. 
• CDC: Sickle Cell Information for Healthcare Providers: Offers tools and information about SCD, including free educational materials to give to patients.
• CDC: 3 Tips About Sickle Cell Disease Every Emergency Provider Needs to Know (PDF)
• Center for Medicare and Medicaid Services: Sickle Cell Disease Provider Toolkit (PDF): Resources for health care professionals to support individuals with sickle cell disease. 
• American College of Emergency Physicians: Managing Sickle Cell Disease in the ED 

Hematologic care transition

• American Society of Hematology: Pediatric to Adult Care Transition
• Got Transition: A federally-funded national resource center on health care transition. It aims to improve transition for pediatric to adult health care through the use of evidence-based strategies for professionals, youth, young adults, and their families.
• Adolescent and Young Adult Transitions in Sickle Cell Disease (YouTube)

Newborn screening

• MDH Blood Spot Disorders Information and Resources: Sickle Cell Disease
• MDH Blood Spot Disorders Information and Resources: Hemoglobinopathies
• MDH Blood Spot Disorders Information and Resources: Hemoglobin Trait

Reducing racial disparities

• MDH Resource Library: Advancing Health Equity in Public Health
• MDH: Health Equity Reports and Publications
• Addressing Local and Global Disparities in Sickle Cell Disease (YouTube): Quarterly DEI lecture at UMN Pediatrics by Patrick T. McGann, MD.
• New England Journal of Medicine: When Actions Speak Louder Than Words--Racism and Sickle Cell Disease
• Change for SCD: Patient Challenges
• Racism's Roots in Medicine & Impact on Early Childhood (YouTube): Pediatric Grand Grounds at UMN Pediatrics by Nathan Chomilo, MD. 

Specialty clinics

• Children's Minnesota: Hemoglobinopathy and Sickle Cell Disease
• M Health: Sickle Cell Disease
• Mayo Clinic: Sickle Cell Anemia Departments and Specialties
• Hennepin Healthcare: Sickle Cell Program

Sharing a resource does not imply endorsement by the MDH Sickle Cell Program or MDH as a whole.