Understanding the Burden of ACC Through the Eyes of Patients

Study Overview
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Brief Summary
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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)

Detailed Description
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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

Official Title
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Understanding the Burden of ACC Through the Eyes of Patients

Conditions
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Adenoid Cystic Carcinoma

Participation Criteria
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Eligibility Criteria
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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: 1. Inability to meet any of the inclusion criteria

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| 1<br>No evident disease | |
| 2<br>Metastatic Disease; Watchful Waiting: Tumors bearing NOTCH Mutation | |
| 3<br>Metastatic Disease; Watchful Waiting: Tumors bearing Notch Wild Type | |
| 4<br>Progressive Disease: Tumors bearing NOTCH Mutation | |
| 5<br>Progressive Disease: Tumors bearing Notch Wild Type | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Key burdens related to the disease or treatments |  | Q4-2021 | 
| Life impacts of those burdens for patient/family |  | Q4-2021 |