Abstract Details

Title Safety and Tolerability of Home Infusions in Down Syndrome Regression Disorder

Topic General Neurology

Presentation(s) P10 - Poster Session 10 (5:00 PM-6:00 PM)

Poster/Presentation
Number 2-011

Objective This study sought to evaluate the safety and tolerability of IVIg in individuals with DSRD receiving home-based infusions.

Background Down Syndrome Regression Disorder (DSRD) is a rare neuropsychiatric condition affecting otherwise healthy individuals with Down syndrome (DS). Multiple studies on DSRD have revealed that immunotherapy with IVIg is both safe and effective although site of infusion has never been studied.

Design/Methods A single-center, case-control, retrospective chart review evaluating infusion reactions was performed for individuals meeting criteria for DSRD and having IVIg infusions between 2019 and 2024 was performed. Adverse events (AEs) were evaluated for severity and need for alterations in infusion plan. A cohort of individuals receiving home-based infusions was compared to a cohort of individuals receiving infusions at an academic medical center.

Results In total, 512 individuals were identified for inclusion but only 162 in the institutional infusion cohort and 153 in the home infusion cohort were met all inclusion criteria. There were no statistically significant differences between cohorts. Individuals receiving home infusions had the same rate of experiencing any adverse event during an infusion (p=0.14, 95%CI: 0.89-2.18) although did have a lower total number of adverse events (p<0.001, 95%CI: 1.18-1.49). Individuals receiving home infusions experienced a lower number of behavioral issues with infusions (p=0.03, 95%CI: 1.07-4.32) and had significantly lower discontinuations of infusions secondary to behavioral issues (p=0.04, 95%CI: 1.04-12.82).

Conclusions Rates of AEs and SAEs in those with DSRD were the same regardless of site of infusion. This data may demonstrate lower rates of behavioral issues associated with infusions when the site of administration is home-based.

Authors/Disclosures
Shermila Pia, MD PRESENTER	Dr. Pia has nothing to disclose.
Saba Jafarpour, MD (Children’s Hospital of Los Angeles)	Dr. Jafarpour has nothing to disclose.
Lina Nguyen (Children's Hospital Los Angeles)	Lina Nguyen has nothing to disclose.
Nicole Nishimori	Ms. Nishimori has nothing to disclose.
Benjamin Vogel	Benjamin Vogel has nothing to disclose.
Natalie Boyd (Children's Hospital Los Angeles)	Natalie Boyd has nothing to disclose.
Lilia Kazerooni, BS	Miss Kazerooni has nothing to disclose.
Mellad Khoshnood, MD (Children's Hospital Los Angeles)	Dr. Khoshnood has nothing to disclose.
Jonathan Santoro, MD (Department of Neurology, Children's Hospital Los Angeles)	Dr. Santoro has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Santoro has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Cycle Pharma. Dr. Santoro has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Dianthus. Dr. Santoro has received personal compensation in the range of $500-$4,999 for serving as a Consultant for National Down Syndrome Society.

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