Understanding the Burden of ACC Through the Eyes of Patients
NCT ID: NCT04706845
Last Updated: 2023-09-29
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
46 participants
OBSERVATIONAL
2021-01-11
2023-08-16
Brief Summary
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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)
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Detailed Description
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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
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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1
No evident disease
No interventions assigned to this group
2
Metastatic Disease; Watchful Waiting: Tumors bearing NOTCH Mutation
No interventions assigned to this group
3
Metastatic Disease; Watchful Waiting: Tumors bearing Notch Wild Type
No interventions assigned to this group
4
Progressive Disease: Tumors bearing NOTCH Mutation
No interventions assigned to this group
5
Progressive Disease: Tumors bearing Notch Wild Type
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
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)
18 Years
ALL
No
Sponsors
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Adenoid Cystic Carcinoma Research Foundation
OTHER
Memorial Sloan Kettering Cancer Center
OTHER
Hadassah Medical Organization
OTHER
Engage Health Inc.
INDUSTRY
Ayala Pharmaceuticals, Inc,
INDUSTRY
Responsible Party
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Locations
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Engage Health
Eagan, Minnesota, United States
Countries
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Other Identifiers
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AL Patient Burden 01
Identifier Type: -
Identifier Source: org_study_id
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