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SCID: Early Treatment Saves Lives Flyer

This flyer was designed to be a quick overview of SCID types and treatments for families of newly diagnosed children. Click here to download.

SCID: A Parent's Perspective - A Guide for Providers

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.

IDF Guide To Hematopoietic Stem Cell Transplantation

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.

SCID Compass Info, FAQs and Facts

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.

IDF's Recommendations for Long-term Follow-up for SCID

IDF highly recommends annual lifelong medical evaluation of all persons with SCID – regardless of age, treatment type, or treatment timeline – in order to ensure their immune systems are functioning normally and to identify any side effects from treatment. Click here to read IDF's recommendations.

SCID: An Overview of Educational and Emotional Needs

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.

A Journey Map for Parents of Children with SCID

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.

A Research Article on Parent Needs During the SCID Journey

Members of the SCID Compass team published an article in Frontiers in Immunology in May 2020. The article described how the team gathered information from parents through surveys and needs assessments to create the SCID Journey Map. Click here to read the article.

IDF Patient Handbook Chapter on SCID

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.