The fourth annual SCID Compass Summit is set for June 23-24, 2022. The two-day event will be virtual and offer an opportunity for connection, learning, and sharing of ideas about severe combined immunodeficiency. Stay tuned for an announcement of speakers and topics and registration information in early 2022.
What is SCID?
Severe Combined Immune Deficiency (SCID, pronounced "skid") is a life-threatening primary immunodeficiency (PI) in which there is combined absence of T cell and B cell function. There are at least 20 different genetic defects that can cause SCID. Patients affected with SCID are highly susceptible to severe and recurrent infections. Without treatment, infants with SCID typically do not live more than one to two years. This condition is generally considered to be the most serious of the primary immunodeficiencies.
What is SCID Compass?
SCID Compass, a HRSA-funded program, seeks to improve outcomes for infants with SCID by enhancing access to and use of educational resources, providing linkages to critical services for patients and families, and developing protocols and mechanisms for long-term follow-up for infants identified with SCID through newborn screening.
The goals of the project are to increase awareness and knowledge about SCID and newborn screening for SCID among parents, families, healthcare providers, and public health professionals; provide education, training, and support for newborn screening programs; educate families with children diagnosed with SCID (especially those in rural and underserved areas) and link them to clinical and other care services, and work to improve clinical care through education and training for providers caring for individuals with SCID.
The vision for SCID Compass has been to serve as a hub of information and resources for parents, caregivers, and healthcare professionals as they navigate next steps after a positive TREC-screening for SCID.
What is the SCID Compass Summit?
The SCID Compass Summit is a two-day gathering of stakeholders whose mission is to plan, share and collaborate on the goals and objectives of SCID Compass.
SCID stakeholders from across the United States (and around the world) are invited to attend this virtual gathering. These stakeholders include physicians, nurse practitioners, other healthcare and laboratory professionals, patients, parents/caregivers, and industry leaders. The summit will bring together a vast array of individuals to enhance discussion surrounding resources, support, and education for SCID.