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SCID Toolkit

The multi-chapter SCID Toolkit provides parents with an overview of what to expect during diagnosis, treatment in the hospital, post-treatment, the return home, and the school-age years. Click here to download the toolkit in English.

The toolkit is also available in the following languages:

 

SCID Parent Fact Sheet

The SCID Parent Fact Sheet explains basic information about SCID, the importance of follow-up, and guidelines parents should adhere to before a final SCID diagnosis. Click here for a version with customizable contact information. Click here for a version containing SCID Compass as a contact.

SCID Provider Fact Sheet

The SCID Provider Fact Sheet summarizes the causes of SCID, describes how SCID is identified through newborn screening, outlines a list of considerations related to handling an abnormal newborn screening for SCID, explains available treatments, and offers resources related to research, clinical care, and parent support. 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.

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 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.

IDF Patient Handbook Chapter on SCID

The IDF Patient Handbook contains chapters on many primary 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.

Newborn Screening for SCID and Conditions Associated with T Cell Lymphopenia

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 Lymphopenia.

Live Rotavirus Vaccine

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.

SCID Telehealth in American Indian and Alaskan Native Communities

This white paper describes how the use of telehealth can provide better medical care for babies born with SCID in American Indian and Alaskan Native communities, where the incidence of SCID is higher than average. Click here to download the white paper.

A Research Article on Provider Needs Related to SCID

Members of the SCID Compass team published an article in Frontiers in Pediatrics in February 2022. The article describes how providers experience gaps in knowledge about SCID. Click here to read the article.