A Global Observational Registry of Adult Patients with Homozygous Familial Hypercholesterolemia (HoFH)

UBC efficiently and strategically manages a global rare disease registry with a rolling start-up, including mandated annual data collection and reporting.

For more than six years, UBC has been conducting a long-term global product exposure registry for patients with homozygous familial hypercholesterolemia (HoFH). Delays with the reimbursement process in several countries had a measurable impact on site selection, overall recruitment, site engagement, and costs. UBC’s strong, consistent support services proactively engage sites by developing robust CRA site management and establishing strong relationships with the Sponsor Medical Science Liaisons. This in turn has ensured, year after year, that study milestones are met to support the mandated FDA/EMA annual analyses.

To learn more about our global observational registry experience, head here.