"If you are diagnosed with ACC, please join our fight and consider donating a tumor sample for this important research."

What We Do

Since its inception in 2006, the ACC Research Program at TGen has made significant strides toward understanding ACC and its treatment strategies.

The ACC Research Program focuses in three areas: the collection of adrenocortical tumors (both benign and malignant), the molecular characterization of those samples, and validation of new therapeutic options prior to clinical trials.

ACC Tumor Repository

Tumor tissue samples are critical to the advancement of this important research and to the discovery of better treatments for patients. TGen houses one of the largest “frozen” ACC-specific tissue banks in the world.

By joining our fight and donating a tumor sample for this important research, you are helping other facing this devastating illness.

All personal information will remain anonymous. There is no cost to you, your physician or your hospital. Please contact the Study Coordinator to find out more about the study or to join the study

ACC Tissue Donation

For questions about how you can donate your tumor for research, please contact the Study Coordinator at 602-343-8653 or email crc@tgen.org, or click here.

Understanding ACC Tumors

Dr. Demeure leads a team of scientists and clinicians who, for the first time, have completed the first whole genome sequencing of ACC tumors.

This offers new insight into the possible causes of this extremely rare and aggressive form of cancer by identifying all 3 billion chemical DNA bases of ACC tumors. Researchers compare the cancer DNA to a patient’s normal DNA to discover what’s different; what mutations might cause the disease.

How Whole Genome Sequencing Will Help

In recent years, a new method for sequencing genes called whole genome sequencing, or WGS, allows researchers to dig deeper into the human genome than ever before by providing more information and increasing the probability of identifying something significant.

TGen is a pioneer in the use of WGS, which provides a letter-by-letter macro analysis of a humans genetic makeup that allows researchers to identify genetic differences, and then leverage that information toward targeted and improved therapies. The hope is that the information we obtain from whole-genome sequencing will enable us to pinpoint the abnormalities of this tumor, see what it tells us about its biology, and in turn, use that information against the disease in a clinical setting.

Next Steps

With the sequence analysis in hand, the next step is prioritizing a list of potential therapeutic targets: a protein whose activity is modified by a particular drug, which leads to a desired therapeutic effect.

  • The researchers need to identify the cellular pathways best suited for targeted therapies, which should dramatically improve the outcome for patients with ACC.
  • At a minimum, the hope is to make ACC a manageable disease, and ultimately, a curable cancer.

Collaborations

Investigators from Arizona, Minnesota, Canada, Australia, Germany, and others have contributed tumor samples to this ongoing project. The ACC research team at TGen is eager to work with all investigators on efforts to improve treatments for affected patients.  To that end, we are committed to sharing our data sets with qualified researchers. 

Researchers wanting access to current data, please contact the Study Coordinator at 602-343-8653 or email crc@tgen.org, or click here.