{"id":10894,"date":"2026-04-09T09:33:59","date_gmt":"2026-04-09T07:33:59","guid":{"rendered":"https:\/\/www.hartwigmedicalfoundation.nl\/?p=10894"},"modified":"2026-04-09T13:29:47","modified_gmt":"2026-04-09T11:29:47","slug":"the-value-of-the-genaya-project-for-patients-of-the-future","status":"publish","type":"post","link":"https:\/\/www.hartwigmedicalfoundation.nl\/en\/the-value-of-the-genaya-project-for-patients-of-the-future\/","title":{"rendered":"The value of the GENAYA project for patients of the future\u00a0"},"content":{"rendered":"\n

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<\/a> aims to use whole genome sequencing (WGS) in one thousand young adults with cancer (AYA\u2019s, ages 18\u201339) 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. <\/strong><\/p>\n\n\n\n

Frank van Wijck, science journalist<\/em><\/p>\n\n\n\n

Broekman is enthusiastic about the GENAYA project. \u201cFor two reasons,\u201d she says. \u201cFirst, for today\u2019s 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\u2019s patient. We want to be able to give future patients better news than we can give today\u2019s patients. To do that, we need to systematically collect this kind of data and learn to recognize patterns.\u201d <\/p>\n\n\n\n

\"Portrait
Marike Broekman<\/figcaption><\/figure>\n\n\n\n
\n

“We want to be able to give future patients better news than we can give today\u2019s patients. To do that, we need to systematically collect this kind of data and learn to recognize patterns.\u201d<\/p>\n<\/blockquote>\n\n\n\n

Nogarede agrees. \u201cWe often meet people at an extremely impactful moment in their lives,\u201d she says. \u201cSometimes we don\u2019t yet fully understand what\u2019s going on with them, but we already have to prepare them for the possibility of bad news. In those moments, it\u2019s especially meaningful that we\u2019re not only focused on what\u2019s needed today, but also contributing to knowledge that may make care for similar patients more hopeful in the future.\u201d <\/p>\n\n\n\n

Today\u2019s patient 
<\/strong>WGS can also provide value for today\u2019s patient, Broekman explains, for example when the tumor\u2019s DNA reveals a clue for targeted treatment. \u201cFor some populations, this is already relevant,\u201d she says. \u201cIn glioblastoma, for instance, we sometimes find a \u2018target\u2019 that could make a targeted therapy possible. In practice, this doesn\u2019t always lead to treatment. A study may be closed, or clinicians may judge that it\u2019s 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\u2019s going on and what the possibilities might be later. You can always learn from it.\u201d <\/p>\n\n\n\n

According to Broekman, successful implementation depends entirely on collaboration and organization. \u201cTo properly integrate WGS into practice, you need to identify eligible patients in time and organize the process around surgery, tissue collection, and material handling,\u201d she says. \u201cThat only works if everyone knows what\u2019s needed and works together. It\u2019s truly teamwork. Claudine and her colleague, student researcher Tara Ramsoedh, keep track of everything. They\u2019re always willing to explain things again. And the support from Hartwig helps enormously.\u201d <\/p>\n\n\n\n

\n

“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.”<\/p>\n\n\n\n

\"Portrait
Claudine Nogarede<\/figcaption><\/figure>\n<\/blockquote>\n\n\n\n

Nogarede oversees the practical execution. \u201cEven 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\u2019s resolved. It\u2019s also important that Tara and I are well attuned to each other. We can take over each other\u2019s tasks when needed. That keeps it manageable. We\u2019ve now been able to organize this for 32 patients.\u201d <\/p>\n\n\n\n

Patients from many hospitals 
<\/strong>Nogarede participates in the multidisciplinary meetings where the WGS results are discussed and what they may mean for these AYA patients. \u201cWe make sure\u2014for example, for a young woman referred for removal of a brain metastasis\u2014that 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.\u201d Broekman adds, \u201cA clinician may find that challenging. But sometimes it leads to questions you hadn\u2019t thought of yourself. And beyond that: isn\u2019t that autonomy wonderful?\u201d <\/p>\n\n\n\n

According to Broekman, patients are often willing to contribute to the knowledge being built through the GENAYA project. \u201cIt\u2019s incredibly moving to see how altruistic they are,\u201d she says. \u201cSome are in the final phase of life and are still motivated to contribute to knowledge that may help future patients.\u201d Nogarede adds, \u201cThey\u2019re open to the opportunities that exist, even though they know it\u2019s not necessarily a win-win situation. We\u2019re very clear about that.\u201d <\/p>\n\n\n\n

Culture<\/strong>
Broekman is one of the authors of the book #vaniknaarwij<\/em>, about cultural change in healthcare. \u201cIt 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\u2019s 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\u2019t been enough attention to intercollegial and interprofessional collaboration, even though it\u2019s essential here.\u201d <\/p>\n\n\n\n

\n

“We need to systematically collect this kind of data and learn to recognize patterns.\u201d <\/p>\n<\/blockquote>\n\n\n\n

Nogarede has also been involved in the Dutch Brain Tumor Registry. \u201cYou have to collect data before you can start seeing patterns,\u201d she says matter-of-factly. \u201cSometimes you notice things in patients\u2014certain occupations or previous treatments. The more data you collect systematically, the more you can learn from the similarities or differences you begin to recognize.\u201d <\/p>\n\n\n\n

When asked what is needed to sustainably integrate WGS into routine diagnostics, Broekman remains pragmatic. \u201cWe\u2019ll figure that out together\u2014as neurosurgeons, neuro-oncologists, medical oncologists, and especially pathologists. But the experience with GENAYA shows that it\u2019s possible when you all put your shoulders to the wheel.\u201d <\/p>\n","protected":false},"excerpt":{"rendered":"

The GENAYA project has been extended through 2028. 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