This flyer was designed to be a quick overview of SCID types and treatments for families of newly diagnosed children. Click here to download.
This brochure provides information about experiences of parents with newly diagnosed children. It highlights challenges faced by families and suggestions for what providers can do to help parents during this critical time. The information is based on interviews with parents of children with SCID. Click here to download.
This guide includes Hematopoietic Stem Cell Transplantation (HSCT) approaches that could potentially benefit patients with several types of primary immunodeficiency diseases (PI). Subsequent chapters provide more details as to how a patient is prepared for a transplant, what the transplant experience is like, and what life can be like after a transplant. Click here to download.
This flyer describes the SCID Compass program, offers answers to frequently asked questions about SCID, and provides a SCID Fact sheet for quick reference. Click here to download.
Families of children with SCID have unique educational and emotional needs. Through colorful graphics and digestable nuggets of information, this research summary, based on parent surveys, shows stages that families will go through on their journey with SCID and outlines some basic topics they want to learn more about. Click here to see the research summary.
This Journey Map outlines the five stages parents experience as they care for their infant with SCID. Those stages are diagnosis, pre-treatment, post-treatment, treatment, and the new normal. The Journey Map describes how parents may feel at different stages and what their top priorities are for information. Click here to view the Journey Map.
Members of the SCID Compass team published an article in Frontiers in Immunology in May 2020. The article describes how the team gathered information from parents through surveys and needs assessments to create the SCID Journey Map. Click here to read the article.
The IDF Patient Handbook contains chapters on many primay immunodeficiencies including SCID. The SCID chapter features an overview of SCID, definitions of several SCID types, clinical presentations of SCID, how SCID is diagnosed, the role of inheritance in SCID, the importance of isolation, and SCID treatments. Click here to read the IDF Patient Handbook Chapter on SCID.
This publication decribes what low T cell results mean in a newborn screening test, why it's important to follow-up with a specialist, what conditions can be seen in babies with no or low T cells, the possiblity of a SCID diagnosis, and what to do to keep your baby from getting sick while waiting on a definitive diagnosis. Click here to download the Understanding the Low T Cell Results from Your Baby's Newborn Screening.
This publication discusses important points to know upon learning your baby has SCID. The brochure: defines SCID; provides a list of safety precautions to take such as isolation, avoiding live vaccines, and making sure blood transfusions are irradiated; describes how SCID is treated; and explains what causes SCID. Click here to download SCID: A Guide for Parents Following a Diagnosis. Click here for a Spanish version of SCID: A Guide for Parents Following a Diagnosis.
This publication explains what an abnormal newborn screening test means, defines SCID, discusses other immune system conditions that could cause an abnormal screening, and describes how SCID is treated. Click here to download Newborn Screening for SCID and Conditions Associated with T Cell Lymphonpenia.
This brochure explains the purpose of the rotavirus vaccine and babies with SCID should not receive the vaccine. The rotavirus vaccines are live attenuated rotavirus strains and babies with SCID will experience severe gastroenteritis if given the vaccine. Click here to download the Live Rotavirus Vaccine brochure.
Members of the SCID Compass team published an article in Frontiers in Immunology in October 2020. The article explains how newborn screening for SCID can be improved upon by expanding communication pathways and educational outreach, and establishing more formal, long-term follow-up. Click here to read the article.