Expectations and Experience: Parent and Patient Perspectives
Regarding Treatment for Severe Combined Immunodeficiency
(SCID)


Published in August of 2021 in Volume 229 of Clinical Immunology, this article compiles the data regarding parent and patient perspectives.

Introduction: Infants with SCID are treated with hematopoietic cell transplantation (HCT)
or gene therapy (GT). Caregiver perceptions of pre-treatment counseling and understanding of
durability of HCT/GT are poorly understood.

Methods: A survey was designed and distributed to families of patients with SCID. Topics in
the questionnaire included SCID genotype and treatment, family recollections of pre-treatment
counseling and present clinical status.

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Results:…..

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