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.