Novellia Research Finds Health Systems Typically Miss a Third of an Ehlers-Danlos Patient’s Medical History, Complicating Diagnosis and Research

Presented at the NORD Breakthrough Summit, the findings show EDS patients wait a median of nearly eight years for a diagnosis, a delay that single-system records understate

NEW YORK, Oct. 26, 2026 /PRNewswire/ — Novellia, the patient data company that unifies a person’s clinical histories across every system, practice, and provider they’ve used, today announced new research showing that no single health system has a complete picture of a typical Ehlers-Danlos syndrome (EDS) patient’s care, with roughly one-third of their medical history held elsewhere. This fragmented picture makes it harder to connect the dots across a patient’s care journey, with the average time to diagnosis taking 8 years. 

EDS is a group of rare genetic connective-tissue disorders that often co-occur with POTS, mast cell activation syndrome, gastrointestinal dysmotility, and chronic pain. Patients seek care across cardiology, allergy/immunology, gastroenterology, neurology, rheumatology, and physical therapy, often at health systems that do not share records. Most real-world studies of EDS draw on a single health system’s data and therefore only capture part of the patient’s history.

Using records that patients authorized Novellia to gather from every health system they use, researchers analyzed 494 patients with EDS, measured how fragmented their care was and compared the cohort with patients with rheumatoid arthritis, another complex multi-specialty condition.

Additional findings from Novellia’s research illustrate just how fragmented the EDS patient journey can be across providers and health systems:

• A single health system is missing much of patient history. For patients with data from two or more systems, the best-connected system held a median of 68% of their record. Nearly half of systems (48%) lost more than a third of their record to any single-system view.
• EDS patients see more specialists than patients with other chronic conditions. Compared with rheumatoid arthritis, EDS patients saw more specialists (19 vs. 16), used more care sites, and used more independent health systems.
• Most patients are treated in several health systems at the same time. 56% of multi-system patients were treated in several systems at the same time; 16% moved from one system to the next. About 60% had a multisystem comorbidity picture split across two or more systems.
• Time to diagnosis is long, and single-source data understates it. The median time from a patient’s first diagnostic record to their first EDS-specific code was 8.0 years. The shortest measured timelines clustered among patients with data from only one system, which suggests incomplete records understate how long diagnosis takes.

The findings come as the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders prepares to publish updated classification criteria on December 2, 2026, followed by a new diagnostic pathway for clinicians in March 2027, according to The Ehlers-Danlos Society.

“Folks living with Ehlers-Danlos often carry their history from a cardiologist to a gastroenterologist to an allergist in completely different health systems, then wait nearly eight years for someone to connect their symptoms to one diagnosis,” said Shashi Shankar, Co-Founder and CEO of Novellia. “When patients have their full story in one place, they can walk into every appointment ready to advocate for their own care. And when they choose to share it, de-identified, with researchers, it helps build better treatments and an easier path for the next family.”

Novellia’s EDS research findings will be presented this week at the NORD Rare Diseases & Orphan Products Breakthrough Summit in Washington, D.C. Poster #IR026 on October 26th. The full poster is available here.

People living with EDS or other rare diseases can bring their complete health history into one place at novellia.com and help contribute to the growing body of research.

About Novellia

Novellia, Inc. is a patient data company that helps people find and unify over 20 years of health data in seconds so they can get better care, while accelerating medical breakthroughs by partnering with patients to help researchers get the most complete view of the patient journey. Named one of Digital Health New York’s 10 startups to watch, a 2026 Fierce Outsourcing Award recipient for Innovation in Drug Development, and a 2026 MedTech Breakthrough Award winner for Best Healthcare Data Repository Solution, Novellia is the only real-world data company built entirely on information patients choose to share with research. Novellia is backed by peer-reviewed research presented at medical congresses, including ASCO, NORD, APHA, IMPACCT, and SABCS. To learn more, visit www.novellia.com.

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