From first families to first trials

Julie van der Zee (VIB-UAntwerp Center for Molecular Neuroscience) on biobanking, trust, and the long road from discovery to intervention

How a decades-long conversation with families turned early gene discovery into trial readiness

“We still get emails…”

Every few months, an email lands in Julie van der Zee’s inbox from a family whose history with the Antwerp neurogenetics teams goes way back, sometimes for 30 years or more. A parent or aunt once participated in the early studies that mapped one of the genetic causes of familial Alzheimer’s; now an adult child writes with new questions: Should I consider carrier testing? What about preimplantation genetic diagnosis? Are there clinical studies we could join?

For Julie, who leads the biobank efforts at the VIB-UAntwerp Center for Molecular Neurology, those messages are the living proof that long-horizon science only delivers if relationships, records, and ethics are cared for as diligently as the data.

“Discoveries don’t end at publication,” she says. “Families don’t stop needing information. Closing the loop is part of the job.”

Back then: mapping families

In the 1980s and 1990s, Antwerp research teams led by Christine Van Broeckhoven identified and followed large multigenerational families with early-onset Alzheimer’s disease, including presenilin (PSEN1) kindreds. The work was painstaking: clinical histories, pedigrees, consent documents and linked biomaterials that allowed molecular follow-up as methods evolved.

It was also a different era for genetics. Before next-generation sequencing, discovery relied on linkage maps, positional cloning, Sanger reads… All expensive, low-throughput approaches, she says.

Share this with your network

Grow with us

Stay up to date

Get notified about new articles, Tips & tricks and other opportunities.