Merger Aims to Safeguard Rare Disease Patients’ Health Data Across Providers

Two Irish health‑tech startups are merging to provide patients with a single, continuous health and research record, eliminating the need to start over with each new doctor visit or clinical trial.

Cushla, which enables patients to own and control their health data, is acquiring the clinical research platform Clirinx. The merger will link Cushla’s patient records with Clirinx’s unique patient identifier, allowing rare‑disease patients to maintain a unified record across providers and studies.

Clirinx was founded by Gerry Nesbitt, who lives with primary biliary cholangitis—a chronic autoimmune disease that slowly damages the liver’s small bile ducts. As someone affected by a rare condition, he observed how research data often becomes isolated after a study concludes.

Clirinx’s clinical research ID addresses this problem by assigning patients a unique identifier that travels with them from one trial to the next, according to David Soden, an Irish go‑to‑market leader recruited by Cushla to support the funding round for its acquisition of Clirinx.

“If you were diagnosed with a rare disease tomorrow, you would have only a five percent chance of learning about an available treatment—a truly dire situation,” Soden said in an interview at a digital health event held last week at the Guinness Enterprise Centre in Dublin.

Rare diseases impact about 300 million people worldwide, yet most lack effective therapies. Soden points out that recruiting and retaining trial participants is a major obstacle; without a method to follow patients across studies, researchers frequently lose touch after a trial ends, forcing new studies to begin recruitment from scratch.

“We do not sell raw patient data to pharmaceutical companies—or to anyone else,” Soden stated. “Instead, pharma purchases governed access to de‑identified, composite datasets, which represents a fundamentally different approach from current practices.”

The merged entity has already raised €555,000 from Irish investors and has started constructing its first patient registry in partnership with the American Liver Foundation, an advocacy group representing roughly 50,000 U.S. patients. Soden also noted that several pharmaceutical companies have expressed interest in conducting longitudinal studies on the platform.

Soden emphasized that the company’s short‑term priority is the U.S. market, where he believes the regulatory landscape is more conducive to scaling than Europe’s fragmented system.

The next milestone is closing the fundraising round required to finalize the acquisition. Once completed, Cushla aims to expand into the United States and establish formal partnerships with additional patient advocacy groups. Soden said the company plans to allocate a share of future pharmaceutical revenue to those groups, positioning this as a way to keep patients at the heart of the business.

“Our focus remains on patients,” Soden declared. “We intend to monetize through pharmaceutical data access and return a portion of revenue to patient advocacy groups—but ultimately, we aim to move beyond being merely a billing mechanism.”

Editor’s note: This article stems from conversations during a trip hosted by Enterprise Ireland. The organization invited MedCity News Associate Editor Katie Adams to Dublin; her travel expenses were covered by Enterprise Ireland, which had no influence on the editorial content.

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