September is Sickle Cell Awareness Month, an opportunity to increase understanding of sickle cell disease (SCD), the most common inherited genetic blood disorder in the United States. SCD occurs when an individual inherits a hemoglobin mutation from each parent, causing red blood cells to become rigid and sickle-shaped. These abnormal cells can block blood flow, leading to pain crises, increased risk of infection, organ damage, and other serious complications.
To help improve care for individuals living with SCD, the Virginia Department of Health established the Virginia Statewide Sickle Cell Disease Registry, a secure, HIPAA-compliant database created through legislation passed in 2024. By collecting demographic and disease-specific information, the registry helps public health officials, researchers, and healthcare providers better understand the needs of Virginians with SCD and identify opportunities to improve care, access to services, and long-term outcomes.
Information reported to the registry may include a patient's name, address, sex at birth, race, ethnicity, gender, date of birth (optional), and type of sickle cell disease. All collected information is confidential and protected under HIPAA. Patients seen in
CHKD's Comprehensive Sickle Cell Program will be reported to the registry unless they
choose to opt out.
Patients and families interested in learning more about the registry can visit the
Virginia Department of Health's registry resources or contact
SickleCellRegistry@VDH.Virginia.gov for more information.
The registry will help:
Improve access to specialty care and referrals.
Identify unmet needs and support services for individuals with SCD.
Advance research on disease prevalence, risk factors, and outcomes.
Inform policies and programs that improve quality of life for patients and families.
Help us and the Virginia Department of Health raise awareness of sickle cell disease and the new statewide Sickle Cell Disease Registry by discussing it with eligible patients and families.
Please Note: When referring patients to CHKD's Sickle Cell Program, please notify families of the diagnosis before their first visit with our team. Having this conversation in advance helps families prepare for their appointment and supports a smoother transition to specialty care.
