This Merger Wants to Prevent Rare Disease Patients from Losing Their Data

Two Irish health tech startups are joining forces to give patients one continuous health and research record instead of starting from scratch every time they see a doctor or join a trial.

Cushla, which lets patients own and control their health data, is absorbing clinical research platform Clirinx. They’re pursuing a merger to connect Cushla’s patient records with Clirinx’s unique patient ID system — a move designed to let rare disease patients build one unified record instead of losing it with every new provider or study.

Clirinx was built by Gerry Nesbitt, who has primary biliary cholangitis, a chronic autoimmune disease that gradually ruins the small bile ducts inside the liver. As a patient with this rare disease, he saw how easily research data gets siloed once a study ends. 

Clirinx’s clinical research ID seeks to solve this issue by giving patients a unique identifier that follows them from trial to trial, explained David Soden, an Irish go-to-market leader that Cushla brought on to help with the capital raise needed to fund its acquisition of Clirinx.

“If you found out tomorrow you had a rare disease, you have a 5% chance of finding out there’s a treatment. That’s a horrendous place to be,” Soden stated during an interview at a digital health event last week at the Guinness Enterprise Centre in Dublin.

Rare diseases affect roughly 300 million people across the globe, but the vast majority have no suitable treatment options. Soden attributes this gap partly to how difficult it is to recruit and retain patients for clinical trials. Without a way to track patients across studies, researchers often lose contact with participants once a trial ends, forcing future studies to start recruitment from zero.

“We don’t sell the raw patient data to pharma. We don’t sell it to anybody,” Soden said. “Pharma will buy governed access to de-identified, composite datasets — and that’s very different to what’s happening today.”

The combined company has already secured €555,000 in funding from Irish investors, and Soden noted it’s begun building its first patient registry with the American Liver Foundation, an advocacy group representing about 50,000 patients in the U.S. He added that pharma companies have also approached Cushla about running a longitudinal study using the platform. 

Soden pointed out that the startup’s near-term focus is the U.S. market, where he said the regulatory environment is easier to scale than in Europe’s more fragmented system.

The company’s next step is closing the fundraising round needed to complete the acquisition, after which Cushla plans to expand into the U.S. and formalize partnerships with more patient advocacy groups, Soden explained. He said Cushla intends to share a portion of future pharma revenue with those groups, framing it as a way to keep patients at the center of the business. 

“Our focus is on patients,” Soden declared. “We’re going to look at monetizing through [pharma data access], and we will look at doing a rev share back into the patient advocacy groups to help them — but at the end of the day, we’re trying to become less of a billing mechanism.”

Editor’s note: This story is based on discussions held during a trip hosted by Enterprise Ireland. The organization invited MedCity News Associate Editor Katie Adams to attend in Dublin — travel expenses were covered by Enterprise Ireland, but company officials had no input in editorial coverage. 

Photo: Nadzeya Haroshka, Getty Images