Research
Why ACC Research Matters for Patients
Without research, there can be no progress. Because ACC is a very rare cancer, every piece of information counts. Compared to more common cancers, we still know relatively little about how ACC develops or why it behaves differently from person to person.
Every breakthrough in understanding and treating ACC begins with research. Each study, data point, and shared experience helps doctors and scientists worldwide to improve diagnosis, therapy, and long-term outcomes. With every clinical trial, and every patient who participates, we move closer to our goal: making ACC a curable disease.
Through ongoing research, we can:
- Understand how ACC grows and spreads
- Develop more effective and personalized treatments
- Reduce side effects and improve quality of life
- Increase long-term survival and chances of cure
How Can You Easily Make a Difference?
You can support research in several simple but powerful ways. One of the most important is participating in a registry. Registries collect anonymized medical information – such as test results, imaging data, and treatment outcomes – from people diagnosed with ACC. This helps researchers identify patterns, improve diagnostics, and develop more effective treatments. You can also contribute by allowing your anonymized medical data and any remaining diagnostic tissue samples to be used for scientific studies. This does not require any additional tests or hospital visits, and it will not affect your treatment in any way. By sharing your data through registries or research projects, you help doctors and scientists worldwide better understand ACC – and bring hope to future patients.
In some countries, a national ACC registry is already established, while in others, this structure is still being developed. Even if no national registry exists where you live, participation is often possible through an international registry or via a specialized ACC center. Leading ACC centers are familiar with current research initiatives and can guide you on how to take part or share your data. It’s best to discuss this early with your treating doctor or ACC specialist to learn about the options available to you.
Once you give your consent, your anonymized data are usually entered into your national registry (if one exists) and may be shared – in anonymized form – with one of the two major international network registries:
- Most European countries contribute to the ENS@T Registry
- Many centers in America, Asia, and Australia are part of the A5 Registry
For further information see below.
Clinical Trials: Access to New Treatment Options
If you’re living with ACC, you might be invited to take part in a clinical trial.
Clinical trials test promising new therapies under careful medical supervision. Participation is always voluntary, and you will receive detailed information about possible benefits, risks, and alternatives. These studies pave the way for the next generation of ACC treatments — and every participant helps move the field forward. On the following sites, you can find planned, ongoing, and completed ACC clinical trials, at least for Europe and the USA. Ask your doctor about a trial that may be available for you.
Personalized Medicine: One Size Doesn’t Fit All
Modern research focuses on molecular and genetic analyses. These studies show that every ACC tumor is unique — and that treatment can be better tailored when we know more about its specific characteristics. For patients, this is why genetic testing can make sense. By analyzing both the tumor’s genetic profile and, in some cases, the patient’s own genes, doctors can identify whether certain mutations may have caused the cancer or could influence treatment choices. In some families, these findings can also help detect inherited conditions (such as Li-Fraumeni syndrome) that may require closer monitoring. This is the foundation of personalized medicine — where therapy is designed around you, not just your diagnosis. It might not be available everywhere, but don’t hesitate to ask whether it could be an option for you.
Working Together Across Borders
Because ACC is rare, no single country or hospital can collect enough data alone.
That’s why international collaboration is essential. There are two major international networks which collaborate closely together on studies and clinical trials:
- The European Network for the Study of Adrenal Tumors (ENS@T) connects researchers and doctors around the world to share knowledge and speed up discoveries – so that new insights reach patients faster. Learn more at ENS@T (https://ensat.wildapricot.org) or contact the organization by email.
- The American-Australian-Asian Adrenal Alliance (A5) is a growing international network of more than 50 leading academic and medical institutions, united by a shared mission to drive progress in adrenal disorders research. Learn more at A5 (https://a5adrenal.org) or contact the alliance by email.
There are also two major networks collaborating on pediatric ACC. They collect and share data to better understand the disease and work toward a cure. For more information, click here.