The GENAYA project has been extended by two years. This gives researchers more time to collect genetic tumor data from AYAs: adolescents and young adults with cancer. At the University Medical Center Groningen (UMCG), GENAYA is being integrated into regular care pathways.
“It’s very important that we reach 1,000 participants,” say Janine Nuver and Gerrie Steursma, both involved in the GENAYA project at UMCG in Groningen. Nuver is a medical oncologist and project leader for AYA care in the North-East Netherlands, and Steursma is an Oncology Data Manager. Why are those 1,000 participants so important, how is the data collected, and what do patients themselves gain from participating?
Cancer in Young Adults: Different from Cancer in Children or Older Adults
The data collected through GENAYA can help researchers understand why cancer in young adults sometimes behaves differently than in older adults. Nuver explains: “It strongly appears that the molecular structure of a tumor is different at AYA age than in children or older adults. This is important for tailoring treatments to this group and for developing better therapies, especially for rare tumor types.”
Researchers can request GENAYA data from Hartwig Medical Foundation, which performs the Whole Genome Sequencing (WGS). “We hope this will help us better understand why treatments work differently in young adults compared to older adults, and why the prognosis for certain tumor types is better or worse at a young age.” — Janine Nuver
Large Databases: The Future of Cancer Research
According to Steursma and Nuver, this method of research - using large databases - is the future. Steursma says: “It’s good that we’re building more large databases so you don’t have to collect everything from scratch each time. Good data is complete, reliable, and recorded in the same way everywhere. If everyone uses their own Access database or Excel sheet with free‑text fields, like in the past, you end up with data you can’t really use.” Nuver adds: “It requires different expertise now, different knowledge than before.”
Within GENAYA, WGS results are recorded in a standardized way, but broader research also requires data from other sources. These may include national databases such as IKNL (the Netherlands Comprehensive Cancer Organization) - which is complex due to different identifiers used for data linkage - as well as locally recorded treatment outcomes. Nuver explains: “Each of the 39 participating hospitals has its own databases, which can even differ by department. Linking all those systems is a challenge. You really need data specialists.”
Care and Research Hand in Hand
What makes GENAYA unique is the combination of clinical care and research. The name GENAYA stands for A national database of whole GENome data of Adolescent and Young Adult cancers, but it’s not just about the database. “GENAYA is care,” Nuver emphasizes.
Patients eligible for GENAYA can receive WGS to identify a treatment target: a genetic abnormality in the tumor for which a targeted therapy may exist. WGS is also sometimes used diagnostically, for example when the diagnosis is unclear. Nuver: “So first and foremost, participating patients benefit directly from taking part in GENAYA.”
In addition to this care component, patients can give permission to add their data to the Hartwig Medical database. “In practice, almost everyone consents to the use of their anonymized data,” says Steursma, “even though they may also participate solely for their own treatment.” Nuver recognizes this: “They’re eager to contribute to research that may help future patients.”
How Does Participation in GENAYA Work?
GENAYA is not yet part of standard care, but at UMCG it is integrated into regular care pathways. Nuver explains: “It always starts with the patient’s own care provider - usually an oncologist or surgeon - who is responsible for enrolling the patient in GENAYA.” A physician must remember that GENAYA is an option, and Nuver regularly brings it up during multidisciplinary team meetings. Pocket cards have also been distributed as reminders.
After enrollment, Steursma arranges the consent forms and ensures that a blood sample and a tumor biopsy are available for the pathology department to send to Hartwig.
Hartwig performs the WGS and sends an analysis report to the Pathology Department. The results are discussed jointly by pathologists and oncologists at UMCG’s Molecular Tumor Board. Nuver: “This is an existing weekly meeting where results from other DNA tests are also discussed. Together we determine whether a target is found and whether a treatment is available.”
Challenges and Opportunities
So far, UMCG has enrolled about fifty young adults in GENAYA, a small number of whom had previously unknown treatable targets. Nuver notes: “We don’t always find a treatable target, even though we hope to. Sometimes there is a target, but no available study or medication. Or the patient is already too ill to start a new treatment.” This may partly reflect the patient population at UMCG, which often includes individuals with limited standard treatment options, such as those with brain tumors or sarcomas.
Rare tumors also have fewer known targets. “We explain to patients what the chances are,” says Nuver. “We do WGS to find something that may help them, and that’s meaningful even when the odds are small. Patients appreciate the effort.”
But one of the main reasons Steursma and Nuver want to continue GENAYA is the research. Nuver: “Across all hospitals, we’re now at about 650 participants. It’s important to reach 1,000 so we have enough data on the rarer tumor types.”
Recruitment has been slower than expected. This may be due to the specific target group: young adults aged 18–39 with metastatic cancer or a local tumor with a poor prognosis, where molecular diagnostics are desired. “At this stage, patients are sometimes too ill to start another treatment,” Nuver explains. In such cases, searching for targets through WGS may no longer be meaningful. Sometimes frozen tissue isn’t available, or a new biopsy can’t be taken. And physicians must remember that GENAYA is an option and have the time to arrange it. Not every hospital has a supportive care pathway like UMCG. “It’s important to reach 1,000 so we have enough data on the rarer tumor types.” — Janine Nuver
Looking Ahead: Better Treatments for Rare Tumors
Thanks to the project extension, funded by the Dutch Cancer Society (KWF Kankerbestrijding), there is more time. This gives current patients more options when diagnoses are unclear or when searching for treatable targets. For the future, it means the DNA of rare cancers will be mapped more thoroughly, potentially leading to better treatment targets. Linking genomic data with clinical databases will also help researchers better understand the entire AYA population.
Nuver concludes: “We’re glad we can continue. This allows us to offer patients another chance to look for a treatment. For our patients with rare tumors, it’s only a modest offering, but in terms of research and the future, it’s incredibly important. We remain committed to reaching those 1,000 participants.”
