"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 us by email at crc@tgen.org.

Understanding ACC Tumors

A team of TGen scientists and clinicians have, for the first time, 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

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 us by email at crc@tgen.org.

Our Mission

The mission of Kirsten’s Legacy is to provide valuable resources to patients and their families while working to cure ACC through identification of new therapies and advancing those discoveries, as quickly as possible, to clinical trials.

How to Get Involved

While ACC is one of most rare and lethal of endocrine cancers, it remains one of the least well funded. Please support our efforts to find new therapies as well as new means of preventing and curing this devastating form of cancer.