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 two-year, 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, health care 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 is for SCID Compass 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.
Who are the SCID Compass partners?
SCID Compass is a program comprised of a partnership between the Immune Deficiency Foundation, the Association of Public Health Laboratories, and RTI International.
The Immune Deficiency Foundation (IDF) is the national nonprofit patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. IDF provides programs, services, and publications for patients and families as well as for healthcare professionals caring for those living with primary immunodeficiency diseases. IDF works to address patient needs through public policy programs by focusing on issues such as insurance reimbursement, patient confidentiality, ensuring safety and availability of immunoglobulin therapy, and maintaining and enhancing patient access to treatment options.
RTI International is an independent, nonprofit research institute dedicated to improving the human condition. Clients rely on RTI to answer questions that demand an objective and multidisciplinary approach—one that integrates expertise across the social and laboratory sciences, engineering, and international development. RTI believes in the promise of science, and is inspired every day to deliver on that promise for the good of people, communities, and businesses around the world.
The Association of Public Health Laboratories (APHL) works to build effective laboratory systems in the U.S. and globally. The Association represents state and local governmental health labs that monitor and detect public health threats. The Newborn Screening and Genetics program of APHL strengthens the role of public health laboratories in newborn screening and genetic testing and designs strategies to address changes in the field.
What is the SCID Compass Summit?
The SCID Compass Summit is a day-long gathering of stakeholders whose mission is to plan, share and collaborate on the goals and objectives of SCID Compass. This is an invitation-only event.
When will the SCID Compass Summit take place?
The SCID Compass Summit will take place on Wednesday, April 1, 2020 from 8:30 AM – 4:00 PM.
Where will the SCID Compass Summit take place?
The SCID Compass Summit will take place at the Hyatt Regency in Denver, Colorado just prior to the Clinical Immunology Society (CIS) Annual Meeting on Immune Deficiency & Dysregulation. Learn more about the CIS Annual Meeting.
Who will be in attendance at the SCID Compass Summit?
SCID stakeholders from across the United States are invited to attend this invitation-only 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.
What is included with registration?
As a SCID Compass Summit attendee, registration includes travel, a one-night stay at the Hyatt Regency, and breakfast and lunch on the day of the summit.
Can I attend the CIS Annual Meeting after the SCID Compass Summit?
Yes, all SCID Compass Summit attendees are encouraged to extend their stay in Denver, Colorado for the CIS Annual Meeting April 2-5, 2020. The CIS Annual Meeting will “focus on cutting edge clinical and basic science research, as well as practical applications of these in patient care. The sessions are specifically designed to tackle key issues facing physicians and scientists in the field of clinical immunology, while also exploring its inter-connectedness to other medical disciplines and healthcare in general, and addressing the challenges and benefits of new diagnostic tools, and therapeutic options currently available for personalized treatment of patients with rare immunological disorders.”
Those planning to register for the CIS Annual Meeting must book their own hotel for March 31, 2020 through their departure date. SCID Compass will cover the costs of a one-night hotel accommodation.
Who do I contact if I have more questions?
E-mail SCIDcompass@primaryimmune.org, or call 800-296-4433 and ask to be connected to the SCID Compass Program Manager.