Understanding the Burden of ACC Through the Eyes of Patients

Ayala Pharmaceuticals, Inc,46 enrolled

Overview

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

Study Type

OBSERVATIONAL

Enrollment

Conditions

Adenoid Cystic Carcinoma

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

Inclusion Criteria: 1. Participant must be a person diagnosed with ACC who is 18 years or older 2. For patients with metastatic disease; watchful waiting or progressive disease, participants must know the results of molecular profiling of their tumor 3. 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. 4. Able to read, write and understand English, Hebrew, Arabic, or Russian 5. Able to grant informed consent 6. 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

Locations (1)

Engage Health

Eagan, Minnesota, United States

Outcomes

Primary Outcomes

Key burdens related to the disease or treatments

Time frame: Q4-2021

Life impacts of those burdens for patient/family

Time frame: Q4-2021

Data from ClinicalTrials.gov

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