The value of the GENAYA project for patients of the future 

The GENAYA project has been extended through 2028. A total of 39 hospitals now participate in the project, which is led by Hartwig Medical Foundation. GENAYA aims to use whole genome sequencing (WGS) in one thousand young adults with cancer (AYA’s, ages 18–39) to personalize treatment and expand knowledge about cancer in this age group. At Haaglanden Medical Center, Prof. Dr. Marike Broekman (neurosurgeon and professor of translational neuro-oncology at Leiden University Medical Center) and nurse practitioner Claudine Nogarede are committed to this work for patients with brain tumors. Their experience shows that WGS is feasible in clinical practice, provided that healthcare professionals across the hospital share responsibility for the process. 

Frank van Wijck, science journalist

Broekman is enthusiastic about the GENAYA project. “For two reasons,” she says. “First, for today’s patient. The patients for whom we use WGS are under forty and have brain metastases or a primary brain tumor. If we can do even the smallest thing for these people, it is incredibly valuable. Second, it matters for tomorrow’s patient. We want to be able to give future patients better news than we can give today’s patients. To do that, we need to systematically collect this kind of data and learn to recognize patterns.” 

“We want to be able to give future patients better news than we can give today’s patients. To do that, we need to systematically collect this kind of data and learn to recognize patterns.”

Nogarede agrees. “We often meet people at an extremely impactful moment in their lives,” she says. “Sometimes we don’t yet fully understand what’s going on with them, but we already have to prepare them for the possibility of bad news. In those moments, it’s especially meaningful that we’re not only focused on what’s needed today, but also contributing to knowledge that may make care for similar patients more hopeful in the future.” 

Today’s patient 
WGS can also provide value for today’s patient, Broekman explains, for example when the tumor’s DNA reveals a clue for targeted treatment. “For some populations, this is already relevant,” she says. “In glioblastoma, for instance, we sometimes find a ‘target’ that could make a targeted therapy possible. In practice, this doesn’t always lead to treatment. A study may be closed, or clinicians may judge that it’s not the best option at that moment. But my view is that we must always keep looking. If you find something, it at least helps you better map out what’s going on and what the possibilities might be later. You can always learn from it.” 

According to Broekman, successful implementation depends entirely on collaboration and organization. “To properly integrate WGS into practice, you need to identify eligible patients in time and organize the process around surgery, tissue collection, and material handling,” she says. “That only works if everyone knows what’s needed and works together. It’s truly teamwork. Claudine and her colleague, student researcher Tara Ramsoedh, keep track of everything. They’re always willing to explain things again. And the support from Hartwig helps enormously.” 

“The patients for whom we use WGS are under forty and have brain metastases or a primary brain tumor. If we can do even the smallest thing for these people, it is incredibly valuable.”

Nogarede oversees the practical execution. “Even if a patient comes into view late, we still manage to get everything ready in time so that the right material can be collected properly during surgery. If something is missing or an extra pair of hands is needed, I make sure it’s resolved. It’s also important that Tara and I are well attuned to each other. We can take over each other’s tasks when needed. That keeps it manageable. We’ve now been able to organize this for 32 patients.” 

Patients from many hospitals 
Nogarede participates in the multidisciplinary meetings where the WGS results are discussed and what they may mean for these AYA patients. “We make sure—for example, for a young woman referred for removal of a brain metastasis—that her report is sent to the oncologist in her own hospital, so the information can be included in her treatment plan. Sometimes patients themselves start asking questions about possible treatment options based on the report. Patients are very engaged.” Broekman adds, “A clinician may find that challenging. But sometimes it leads to questions you hadn’t thought of yourself. And beyond that: isn’t that autonomy wonderful?” 

According to Broekman, patients are often willing to contribute to the knowledge being built through the GENAYA project. “It’s incredibly moving to see how altruistic they are,” she says. “Some are in the final phase of life and are still motivated to contribute to knowledge that may help future patients.” Nogarede adds, “They’re open to the opportunities that exist, even though they know it’s not necessarily a win-win situation. We’re very clear about that.” 

Culture
Broekman is one of the authors of the book #vaniknaarwij, about cultural change in healthcare. “It becomes very natural to participate in something like GENAYA when the healthcare culture is one that prioritizes learning and makes space for it. In a culture where everyone is stretched to their limits, that’s impossible. If you want to bring innovations like this into practice, you have to do it together. So we need to keep focusing on that learning culture across healthcare. For a long time, there hasn’t been enough attention to intercollegial and interprofessional collaboration, even though it’s essential here.” 

“We need to systematically collect this kind of data and learn to recognize patterns.” 

Nogarede has also been involved in the Dutch Brain Tumor Registry. “You have to collect data before you can start seeing patterns,” she says matter-of-factly. “Sometimes you notice things in patients—certain occupations or previous treatments. The more data you collect systematically, the more you can learn from the similarities or differences you begin to recognize.” 

When asked what is needed to sustainably integrate WGS into routine diagnostics, Broekman remains pragmatic. “We’ll figure that out together—as neurosurgeons, neuro-oncologists, medical oncologists, and especially pathologists. But the experience with GENAYA shows that it’s possible when you all put your shoulders to the wheel.” 

You read an article in the category Hartwig Medical Database. You may also be interested in Learning healthcare system, Molecular diagnostics, Participating hospitals, Personalized treatment or Whole genome sequencing.
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