Newborn Screen for Severe Combined Immunodeficiency (SCID) Database/Registry

Study on Newborns with Severe Combined Immunodeficiency

J
Jay Jin

Primary Investigator

Enrolling By Invitation
28 days or below
All
Phase N/A
1 participants needed
1 Location

Brief description of study

The purpose of this project is to collect and analyze relevant clinical data from children who have been identified as having a positive newborn screen for severe combined immunodeficiency (SCID) in order to understand the most common causes of SCID in Indiana, identify important immune parameters, determine the safest prophylactic measures, track the outcomes of treatment for SCID, and improve our overall care of this special population of children within our state.

THIS STUDY IS ENROLLING BY INVITATION ONLY - We are the main referral center for newborns who screen positive for severe combined immunodeficiencies. We then take over to continue the diagnostic work-up and care of these patients. We will attempt to recruit families to become a part of this project and explain why gathering and studying this data is important. 

Detailed description of study

Severe combined immunodeficiency (SCID) is a rare genetic condition where a baby is born without a working immune system, making it very hard for them to fight infections. When a newborn screen suggests SCID, families often go through many tests and appointments to figure out what is really going on with their child’s immune system. By looking at the medical information that is already collected during this care, we hope to understand what usually causes SCID in our state, how babies’ immune systems look when they first come to us, which infection‑prevention steps seem safest, and how children do after treatment. Learning from this information will help us improve care for future babies and families who face a positive SCID screen. We will have two cohorts of subjects: retrospective (those already born/diagnosed with severe combined immunodeficiency (SCID) whose retrospective data we would like to collect and maintain), and prospective: children who have been identified as having a positive newborn screen for SCID.

Eligibility of study

You may be eligible for this study if you meet the following criteria:

  • Conditions: Severe Combined Immunodeficiency (SCID), Riley
  • Age: 28 days or below
  • Gender: All

Inclusion criteria:

  • Newborns who positively screened for SCID

This study investigates severe combined immunodeficiency (SCID), a rare genetic condition where a baby is born without a working immune system. This makes it very hard for them to fight infections. The purpose of this study is to collect and analyze clinical data from children who have been identified as having a positive newborn screen for SCID in Indiana. This will help understand the most common causes of SCID in the state and track the outcomes of treatment.

The study will involve two groups of participants: a retrospective group of children already born and diagnosed with SCID, and a prospective group of newborns who have recently screened positive for SCID. By examining existing medical information collected during their care, the study aims to determine the safest infection-prevention steps and how children fare after treatment.

  • Who can participate: Newborns in Indiana who have screened positive for severe combined immunodeficiency (SCID) can participate.
  • Study details: Families will be invited to join a study collecting and analyzing data to understand SCID and improve care.
Updated on 15 Jul 2026. Study ID: PPUL-IIR-NBS-FOR-SCID, 30874
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Interested in the study?

This study is accepting only persons who receive care at a certain clinic or doctor or who are part of an invited group. Questions about this study can be directed to the study team listed in the description or contact your doctor to see if you are eligible.

Accepting Referrals by Invitation Only