Adenoid Cystic Carcinoma
Conditions
Brief summary
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
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
Interventions
None listed
Sponsors
Adenoid Cystic Carcinoma Research Foundation
Memorial Sloan Kettering Cancer Center
Hadassah Medical Organization
Engage Health Inc.
Ayala Pharmaceuticals, Inc,
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Key burdens related to the disease or treatments | Q4-2021 |
| Life impacts of those burdens for patient/family | Q4-2021 |
Countries
United States
Outcome results
None listed