Part of the Colorado Sickle Cell Treatment and Research Center (CSCTRC) newborn screening follow-up program is to work with the primary care provider of newborn infants to ensure that all families of infants identified with sickle cell trait are contacted and notified of the newborn’s screening test results.
The Colorado Sickle Cell Treatment and Research Center will serve as a portal to share information regarding regional providers, community, and educational support services for providers, patients and families.
Coordinated education and training relevant to sickle cell disease will be made available for participating health professionals. Sickle cell disease education will also be promoted among trainees in primary care fields in an effort to develop future medical care leaders who address health care disparities.
Educational materials are available in English as well as Spanish and other languages when available.
The Colorado Sickle Cell Treatment and Research Center will provide sickle cell disease treatment best practices guidelines for children and adults with sickle cell disease. The most current versions will be available on our website and these will be updated when revisions are released.
The Colorado Sickle Cell Treatment and Research Center will identify and support sites of primary care and specialty care that serve children and adults with sickle cell disease; reach out to independent practices, to a variety of community-based systems, including University of Colorado affiliates including those that serve medically indigent in order to expand sites of care. In addition, the CSCTRC will provide a framework for effective transition readiness and transfer of care from pediatric to adult services and for in-patient to out-patient services.
The CSCTRC will coordinate genetic/hemoglobinopathy counseling plans and lab testing through the creation of sickle cell trait follow-up clinics for individuals with sickle cell disease and families of infants identified by the newborn screening program. The community support groups will also conduct broader sickle cell trait outreach to the general community in Colorado. The community support groups (in Denver and Colorado Springs) will also conduct ongoing needs assessments throughout the course of the four-year grant.
Information regarding the Community Support Group in their area is provided to the sickle cell patients and families.