National Patient Registry

Get Connected Logo

SCDAA Announces HRSA Newborn Screening Program Grant Co-Leads

The Sickle Cell Disease Association of America, Inc. National Headquarters (SCDAA) is proud to announce that it is the recipient of the Sickle Cell Disease Newborn Screening Project (SCDNBSP) cooperative agreement awarded by the Health Resources and Services Administration (HRSA). The Sickle Cell Disease Newborn Screening Project is a 2-year collaborative that utilizes its alliance with 10 of its most robust regional community-based organizations and stakeholders across the nation to improve sickle cell care for a broader population of patients. The award total is $2,679,000 a year for a period of two years beginning in June 2015 and ending in May of 2017. HRSA’s continued support of furthering the research, education and treatment of those living with sickle cell disease continues to be unwavering and relentless.

The purpose of the SCDNBS project is to support the endeavors of SCDAA in fortifying the quality of patient care on a holistic basis and not just the malady to address all needs of patients living with the disease. Ten (Co-Lead) community-based organizations were chosen specifically for their strength in leadership and partnership in 5 of the HRSA designated regions across the nation. These Co-Leads will extend their reach by uniting with multiple state partner community-based organizations and other institutions to deliver service to patients, with special focus in hard to service and rural areas to overcome social and service access obstacles. The SCDNBSP will link individuals living with sickle cell disease and their families to knowledgeable service providers, quality medical homes, education and counseling support, community facilitators and navigators for unmet needs and resultant comprehensive life quality care.

One of the major components of the national effort to enhance the overall quality of life for patients living with sickle cell disease is the new Get Connected, patient-powered registry. The registry will support the patient population by developing a more involved and knowledgeable community of individuals. The registry houses basic demographic information for patients, and also allows patients to keep their medical history secured and up-to-date in one electronic location. The registry will provide a continuous stream of newsletters, community forums, and other industry specific information. By maintaining a national patient registry where all patients can actively stay up-to-date on the sickle cell community and maintain their medical histories, the community will become much stronger and unified in their efforts to build better health care solutions for patients across the country. In addition, Get Connected will allow SCDAA to glean aggregate level data from patient entries, including gaining an overview of how many individuals currently living with sickle cell disease reside in the United States. This pertinent data can then be utilized to request substantial funding support for research and treatment of patients with sickle cell disease. This brings us another leap closer to finding a cure.