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Understanding the Burden of ACC Through the Eyes of Patients | Clinical Trials | Clareo Health

COMPLETED

Understanding the Burden of ACC Through the Eyes of Patients

NCT04706845•Ayala Pharmaceuticals, Inc,

Summary

Detailed Description

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

Eligibility

Age

18 - No limit years

Sex

ALL

Healthy Volunteers

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)

Locations (1)

Engage Health

Eagan, Minnesota, United States

Key Dates

Start Date

January 11, 2021

Primary Completion Date

August 16, 2023

Completion Date

August 16, 2023

Last Updated

September 29, 2023

Enrollment

ACTUAL participants

Conditions

Adenoid Cystic Carcinoma

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Adenoid Cystic Carcinoma

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RECRUITINGNA

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Data Source & Attribution

This clinical trial information is sourced from ClinicalTrials.gov, a service of the U.S. National Institutes of Health.

ClinicalTrials.gov last update: September 29, 2023Data synced to Clareo: March 29, 2026

Modifications: This data has been reformatted for display purposes. Eligibility criteria have been parsed into inclusion/exclusion sections. Location data has been geocoded to enable distance-based search. For the authoritative and most current information, please visit ClinicalTrials.gov.

Neither the United States Government nor Clareo Health make any warranties regarding the data. Check ClinicalTrials.gov frequently for updates.

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Understanding the Burden of ACC Through the Eyes of Patients

Inclusion Criteria

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