The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
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Knowledge of severe combined immunodeficiency (SCID) is sometimes lacking in the medical community. That’s because SCID is rare, present in about 1 out of 58,000 births, and healthcare providers may not be familiar with the condition.
Now, thanks to SCID Compass, pediatricians and primary care physicians can access a SCID provider fact sheet. The fact sheet informs doctors about SCID, and provides them with guidelines on how to communicate a diagnosis to a family. Entitled “SCID: What Healthcare Providers Need to Know,” the fact sheet is available on the provider resource page of www.scidcompass.org.
The two-page fact sheet defines SCID, summarizes the causes of SCID, and describes how newborn screening identifies possible SCID. Most importantly, the fact sheet outlines a list of considerations related to handling an abnormal newborn screening for SCID.
If a provider encounters an abnormal newborn screening for SCID, he or she should take the following steps:
The fact sheet also contains information on SCID treatments, including hematopoietic stem cell transplant and gene therapy, and stresses how keeping a child in isolation before treatment leads to a better outcome for the baby. SCID patients who are diagnosed early and are infection-free before treatment have a survival rate of about 95%.
Links to resources related to research, clinical care, and parent support are also included in the fact sheet.
SCID Compass partner Research Triangle Institute developed the SCID provider fact sheet based on surveys conducted in the medical community.
Download the SCID provider fact sheet.
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