Assessing the Comorbidity Burden of Ehlers-Danlos Syndromes (EDS): An Analysis Using US Real-World Data
Author(s)
Jennifer Cheng, MS1, Chloe T Basch, BS(c)2, Natalia Coenen, MPH1, Megan Allen, PhD3, Maryam Ajose, MPH1, Janna Manjelievskaia, MPH, PhD1;
1Veradigm, Chicago, IL, USA, 2Wesleyan University, Middletown, CT, USA, 3Damon Runyon Cancer Research Foundation, New York, NY, USA
1Veradigm, Chicago, IL, USA, 2Wesleyan University, Middletown, CT, USA, 3Damon Runyon Cancer Research Foundation, New York, NY, USA
Presentation Documents
OBJECTIVES: Patients with EDS experience a high comorbidity burden across multiple organ systems. Real-world data quantifying the disease burden among EDS patients compared to the general population are lacking. This study characterizes the EDS population by comparing the comorbidity burden against a non-EDS control cohort using real-world data.
METHODS: We used data from the Veradigm Network EHR linked to Komodo Health claims to identify patients with an EDS diagnosis between 01/01/2010-12/31/2023 (earliest event=index). Patients were required to have ≥12 months of EHR/claims activity pre- and post-index and a known sex reported in their medical record. EDS patients were directly matched (1:3) to non-EDS individuals by age, sex, index, and continuous claims enrollment. Demographics were captured at baseline while clinical characteristics were evaluated in baseline and follow-up.
RESULTS: A total of 107,862 EDS patients and 323,586 non-EDS controls were included. Mean (SD) age was 35 (17.3) and majority were male (83.2%). Prevalence estimates of EDS were 0.07% for females and 0.02% for males, representing an overall prevalence of 0.04% in the study database. Compared to the non-EDS cohort, EDS patients had significantly higher proportions of all measured comorbidities, including fibromyalgia/other myalgias (34.0% vs 9.3%), non-traumatic dislocations/subluxations (11.0% vs 3.8%), easy bruising (1.6% vs 0.7%), migraines (45.2% vs 22.2%), chronic fatigue (45.9% vs 21.3%), asthma (30.0% vs 14.8%), anxiety (55.1% vs 30.2%), nausea (34.0% vs 16.7%), irritable bowel syndrome (15.3% vs 3.8%), and gastroesophageal reflux disease (33.4% vs 16.9%) during baseline (all p<0.0001). Similarly, EDS patients had significantly higher baseline medication use across pain (75.8% vs 51.5%), respiratory (70.2% vs 51.4%), antibiotics (79.5% vs 69.4%), and anti-anxiety (40.6% vs 18.5%) (all p<0.0001).
CONCLUSIONS: Our study highlights the increased comorbidity burden in EDS patients. With no disease-specific treatment options, this puts into perspective the continued need for personalized management of patient conditions and symptoms.
METHODS: We used data from the Veradigm Network EHR linked to Komodo Health claims to identify patients with an EDS diagnosis between 01/01/2010-12/31/2023 (earliest event=index). Patients were required to have ≥12 months of EHR/claims activity pre- and post-index and a known sex reported in their medical record. EDS patients were directly matched (1:3) to non-EDS individuals by age, sex, index, and continuous claims enrollment. Demographics were captured at baseline while clinical characteristics were evaluated in baseline and follow-up.
RESULTS: A total of 107,862 EDS patients and 323,586 non-EDS controls were included. Mean (SD) age was 35 (17.3) and majority were male (83.2%). Prevalence estimates of EDS were 0.07% for females and 0.02% for males, representing an overall prevalence of 0.04% in the study database. Compared to the non-EDS cohort, EDS patients had significantly higher proportions of all measured comorbidities, including fibromyalgia/other myalgias (34.0% vs 9.3%), non-traumatic dislocations/subluxations (11.0% vs 3.8%), easy bruising (1.6% vs 0.7%), migraines (45.2% vs 22.2%), chronic fatigue (45.9% vs 21.3%), asthma (30.0% vs 14.8%), anxiety (55.1% vs 30.2%), nausea (34.0% vs 16.7%), irritable bowel syndrome (15.3% vs 3.8%), and gastroesophageal reflux disease (33.4% vs 16.9%) during baseline (all p<0.0001). Similarly, EDS patients had significantly higher baseline medication use across pain (75.8% vs 51.5%), respiratory (70.2% vs 51.4%), antibiotics (79.5% vs 69.4%), and anti-anxiety (40.6% vs 18.5%) (all p<0.0001).
CONCLUSIONS: Our study highlights the increased comorbidity burden in EDS patients. With no disease-specific treatment options, this puts into perspective the continued need for personalized management of patient conditions and symptoms.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
CO18
Topic
Clinical Outcomes
Topic Subcategory
Clinical Outcomes Assessment
Disease
SDC: Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal), SDC: Rare & Orphan Diseases