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Article History

Received: 29 December 2025

Accepted: 17 February 2026

First Online: 8 March 2026

Declarations

:

: Jonathan D. Santoro has nothing to disclose. Saba Jafarpour has nothing to disclose. Panteha Hayati Rezvan has nothing to disclose. Mellad M. Khoshnood has nothing to disclose. Benjamin N. Vogel has nothing to disclose. Lina Nguyen has nothing to disclose. Lilia Kazerooni has nothing to disclose. Noemi A. Spinazzi has nothing to disclose. Nidhiben Anadani has nothing to disclose. Kristen S. Fisher has nothing to disclose. Robyn A. Filipink has nothing to disclose. Melanie A. Manning has nothing to disclose. Cathy Franklin has nothing to disclose. Eileen A. Quinn has nothing to disclose. Michael S. Rafii has nothing to disclose.

: This study was approved by the Children’s Hospital Los Angeles (CHLA) institutional review board (IRB) in accordance with the Declaration of Helsinki of 1964. Individuals evaluated for DSRD in clinical care were enrolled into a prospective observational natural history study where these data were systematically tracked and stored in a database. Given that symptoms of DSRD are neurocognitive and neuropsychiatric in nature, informed consent was obtained from parents or guardians in all circumstances as no individual had capacity to consent for this study. Assent was obtained when possible and waived when neurocognitive impairment was too profound for the patient to reasonably assent. Individuals required enrollment at the primary site (CHLA) but could have follow-up at other sites if endpoint measures could be completed in the necessary timeframe.