Evaluating the impact of newborn screening for Severe Combined Immunodeficiency

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This project assesses the effects of including Severe Combined Immunodeficiency (SCID) in the newborn bloodspot screening panel. It will involve parents and health professionals from various sites where this screening is being implemented, as well as additional sites for comparative analysis. The study consists of two main components: a mixed-methods study tracking families from screening to the child's fifth birthday, and qualitative interviews with health professionals during the clinical evaluation phase of the national pilot program. The evaluation aims to address uncertainties regarding the introduction of SCID screening in the UK.

Why it matters

Who can join: the full rules

Inclusion Criteria:

Participants must be at least 18 years of age. Participants must be able to understand the purpose and implications of the research study.

Where participants are speakers of languages other than English, the research team will arrange a translator.

Exclusion Criteria:

Where a child dies after recruitment to the project the team will sensitively check whether the parents wish to continue participation to enable their views to be included.

Where it's running

• King's College London
  London, United Kingdom Recruiting

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Gene therapy for treating Artemis-deficient Severe Combined Immunodeficiency

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• Examining the genetic factors behind severe combined immunodeficiency

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  Recruiting National Institutes of Health Clinical Center (CC) · Bethesda, Maryland · NCT00055172

• Gene therapy for X-linked severe combined immunodeficiency using targeted busulfan conditioning

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  Recruiting at 4 sites Phase 1/2 Boston Children's Hospital · Los Angeles, California and 3 other locations · NCT03311503

• Gene therapy for patients with Artemis deficient Severe Combined Immunodeficiency

  This study is testing a new gene therapy for patients with a specific type of severe combined immunodeficiency to see if it can help them fight off dangerous infections when they don't have a matching donor for a transplant.

  Recruiting Phase 1/2 Assistance Publique - Hôpitaux de Paris · Paris · NCT05071222

• Gene therapy for children with X-linked severe combined immunodeficiency

  This study is testing a new gene therapy for children with X-linked severe combined immunodeficiency to see if it can safely help their immune system work better.

  Recruiting Phase 1/2 National Institutes of Health Clinical Center (CC) · Bethesda, Maryland · NCT01306019

• Evaluation of patients with immune function abnormalities

  This study is testing how immune problems affect people with conditions like XSCID and CGD to help find better treatments and understand their health over time.

  Recruiting National Institutes of Health Clinical Center (CC) · Bethesda, Maryland · NCT00128973

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.