Understanding the Burden of ACC Through the Eyes of Patients

This is a comprehensive, cross-sectional study conducted with approximately 40-60 individuals affected by ACC who may know the results of molecular profiling of their tumor.

Primary Objectives:

• To identify the specific burdens faced by patients with ACC
• To compare/contrast the burdens faced by patients with ACC at different disease stages (no evident disease, metastatic disease/watchful waiting, progressive disease)

Secondary Objectives:

• To assess QoL implication in patients living with ACC (Adenoid Cystic Carcinoma)
• To compare the burdens and QoL impacts in people living with ACC, with their tumors bearing Notch mutations or Notch Wild Type due to:

• Rate of disease progression
• Location of Metastases

Inclusion criteria

• Participant must be a person diagnosed with ACC who is 18 years or older
• For patients with metastatic disease; watchful waiting or progressive disease, participants must know the results of molecular profiling of their tumor
• Histologically-confirmed diagnosis of ACC with written proof of disease and molecular profile of tumor provided. This can be a note showing genetic diagnosis from a relevant testing laboratory, physician consult notes, a medical record of diagnosis, or any other single piece of documentation that connects your name/the patient's name with ACC.
• Able to read, write and understand English, Hebrew, Arabic, or Russian
• Able to grant informed consent
• Willing to participate in a 45-to-60-minute telephone interview, including follow up questions (if necessary)

Exclusion criteria

• Inability to meet any of the inclusion criteria