Parental Perceptions About CRISPR and Other Biological Treatments for Fragile X Syndrome Compared with Sickle Cell Disease (2000-2025): Systematic Review Protocol

Parental Perceptions About CRISPR and Other Biological Treatments for Fragile X Syndrome Compared with Sickle Cell Disease (2000-2025): Systematic Review Protocol

Alvin Sherman Library

Fragile X Syndrome (FXS) is a genetic condition associated with intellectual disability, while Sickle Cell Disease (SCD) comprises inherited red blood cell disorders. Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) gene-editing therapies are currently being implemented for SCD but remain experimental for FXS. Understanding caregiver perspectives on CRISPR-based therapies is crucial because families play a central role in weighing risks/benefits during treatment decision-making. Synthesizing evidence on caregiver attitudes toward CRISPR-based therapies for FXS and SCD can help determine if perceptions observed with SCD can inform expectations for FXS. This systematic review will include qualitative, quantitative, and mixed-methods studies published between 2000 and 2025. This protocol follows Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) guidelines. Eligible studies present empirical data on caregiver beliefs, perceived risks/benefits, ethical concerns, treatment acceptability, or decision-making related to CRISPR-based therapies for FXS or SCD. Screening and data extraction will be conducted independently by at least two undergraduate Honors Program reviewers using Rayyan, an AI-supported systematic review management platform. Faculty experts will resolve conflicts. Subgroup analyses will examine differences by race/ethnicity, socioeconomic status, and disease context. Narrative synthesis will be performed, with meta-analysis if feasible. The review aims to characterize caregiver perceptions of risks/benefits, acceptability, and ethical implications of CRISPR-based therapies to assess whether attitudes toward SCD treatments can inform expectations for FXS. Findings are expected to support clinical counseling, inform policy development, and guide future research on CRISPR-based therapies for genetic disorders.