Abstract: SA-PO0703
Disease Burden of Congenital Nephrogenic Diabetes Insipidus (NDI) from a Linguistic Analysis of Social Media Conversations in the United States
Session Information
- Pediatric Nephrology: Transplantation, Hypertension, AKI, Genetics, and Developmental Diseases
November 08, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Pediatric Nephrology
- 1900 Pediatric Nephrology
Authors
- Oberdhan, Dorothee, Otsuka Pharmaceutical Development and Commercialization Inc, Rockville, Maryland, United States
- Knackert, Joshua, NephroDI Therapeutics, Inc, Seattle, Washington, United States
- Sands, Jeffrey J., NephroDI Therapeutics, Inc, Seattle, Washington, United States
- Hagan, Rachael, NephroDI Therapeutics, Inc, Seattle, Washington, United States
- Gandhi, Hema Kannan, Otsuka Pharmaceutical Development and Commercialization Inc, Princeton, New Jersey, United States
- Dandy, Jennifer, Real Chemistry International LLC, New York, New York, United States
Background
Congenital NDI is a rare inherited condition where the kidneys are unable to respond to antidiuretic hormone, leading to excessive urine production and thirst. Early identification and treatment are crucial to prevent serious complications like dehydration, brain damage, failure to thrive, growth retardation, and chronic kidney disease. Current treatment focuses on symptom management and prevention of complications.
This study aims to characterize disease burden of NDI from the patient and caregiver perspective.
Methods
A social listening methodology captured public social media posts from Oct 2022 through Oct 2024 in the United States, using tools such as web crawlers and data partnerships. Sociolinguists analyzed posts using qualitative and quantitative methods.
A single post can report multiple patient experience characteristics.
Results
A total of 52 posts described the experience of individuals with congenital NDI from 33 unique patients and 19 parent caregivers, which included discussion of symptoms in 26 posts (50%), impacts in 18 posts (34.6%), and treatments in 8 posts (15.4%).
Symptom discussions centered around dehydration (n=15) and excessive urination (n=10) with a few others like kidney problems (n=3), electrolyte imbalance (n=2), vomiting (n=2), dry skin (n=1), balance issues (n=1), and weight loss (n=1).
Disease impact discussions centered around the need to hydrate (n=7), limitations with school (n=5), and dietary restrictions (n=4) with other mentions including water intake (n=1), sleep disturbance (n=1), limitations to exercise/sports (n=1), potty training (n=1), and emotional impact (n=1).
Caregiver impact was discussed in 8 posts. Treatment discussions included diet (n=4), diuretic use (n=2), potassium (n=2), G-tube use (n=1). An additional 4 posts referred to medication broadly in the context of costs, treatment shortages, and treatment efficacy.
Conclusion
The 2024 international expert consensus statement on diagnosis and management of congenital NDI defined treatment goals from the clinician perspective (Levtchenko, 2024). The disease burden from the patient perspective is not well described in the literature. This study fills an evidence gap in developing new therapies under consideration of patient-centered drug development principles.