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Understanding the Burden of ACC Through the Eyes of Patients

ACCRF is partnering with Memorial Sloan Kettering, Hadassah University Medical Center, and Ayala Pharmaceuticals to learn more from families impacted by adenoid cystic carcinoma (ACC) regarding disease burden and the impact of ACC on patients and family members. This information will help researchers understand better how the quality of life of ACC patients may be improved. The intention is to publish the findings to educate patients and researchers about ACC.

We need your help! Please consider participating in this research study.

What is required to participate?

  • You must be 18 years of age or older to participate.
  • You must be diagnosed with ACC to participate. You will be asked to provide a medical report (pathology, radiology or molecular profiling report) that ties your name to an ACC diagnosis.
  • You must participate in a 45-to-50-minute telephone interview that can be conducted in English, Hebrew, Arabic, or Russian. No preparation is required but you should be at a computer with internet access at the time of the interview.
  • At the moment, the study is adding only ACC patients with activating NOTCH mutations. You will be asked to provide a molecular profiling report of your tumor, if you have one. Spouses or caregivers of living patients may respond on behalf of these patients.

Will my personal information be kept confidential?

Yes. All personal information will be kept confidential and used only for the purposes of this research study. No information will be shared with or sold to any outside organizations.

Will I be compensated?

After completion of the interview, you will be paid $100 by your choice of a check or an gift card.

How do I enroll?

  • Click here to fill in the RSVP/Survey and provide some times when you will be available for an interview. Not everyone who fills out the survey will be interviewed as there are limited slots available and various patient situations that need to be represented.
  • Currently, the survey is available only in English. Hebrew, Russian and Arabic are coming soon!

If you have questions or need help registering, please call Engage Health at 651-994-0510.