Consistency of parent-report SLC6A1 data in Simons Searchlight with Provider-Based Publications.
Jennifer M BainLeeAnne Green SnyderKatherine L HelbigDominique D CooperWendy K ChungKimberly GoodspeedPublished in: Journal of neurodevelopmental disorders (2022)
We propose that standardized parent-report data collection methods are consistent with provider reports on many core features of SLC6A1-related disorder. The availability of patient registries and standardized natural history studies may fill an important need in clinical trial readiness programs, with larger sample sizes than smaller published case series.