Optimal Methods of Disease Progression and Survival Analysis in Children and Adults Patients With Adrenocortical Cancer (ACC)

NCT04358107 | Active Not Recruiting

• 2 other identifiers: 99992009520-C-N095
• Study Type: observational
• Target: 1,000
• Locations: 1 country
• Sites: 1

Brief Summary

Background: Adrenocortical carcinoma (ACC) is a rare cancer. It has a poor prognosis. Some people live with ACC for years; others live for just months. The average survival from the time of diagnosis is 14.5 months. Researchers do not know if local directed treatments may work better than systemic ones. They want to learn more about ACC by looking at data from previous studies. Objective: To characterize the overall prognosis and treatment responses in people with ACC with various systemic therapies and correlate them with age, sex, race, and disease burden. Eligibility: People with ACC enrolled on any of the following studies: 92-C-0268, 93-C-0200, 00-C-0044, 01-C-0129, 04-C-0011, 09-C-0242, 08-C-0176, 10-C-0203, 13-C-0114, and 14-C-0029 Design: Study researchers will review participants medical records. They will collect the following data: Medical record numbers Demographics (such as age, sex, and race) Treatments (such as surgeries, radiology procedures, and systemic treatments) Time of disease progression between treatments and genetic/molecular data (if available) Time of diagnosis/time of death. All data will be kept in secure network drives or sites. Participants who opted out of future use of data on their prior studies will be not be included in this study.

Conditions

Adrenocortical Carcinoma

Keywords

Treatment Response; Prognosis; Rare Tumor; Natural History

Outcome Measures

Primary Outcomes (1)

• response to treatment

  prognosis and treatment responses among patients with ACC correlated with age, sex, race and disease burden

  ongoing

Study Arms (1)

1

Medical records of subjects enrolled on various ACC studies conducted by CCR

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

primary clinical

You may qualify if:

• Patients enrolled on any of the studies listed below:
• C-0268, 93-C-0200, 00-C-0044, 01-C-0129, 04-C-001, 09-C-0242, 08-C-0176, 10-C-0203, 13-C-0114, 14-C-0029

You may not qualify if:

• Patients who opted out of future use of data on their prior studies will be excluded from this study.

Sponsors & Collaborators

• National Cancer Institute (NCI): lead

Study Sites (1)

National Cancer Institute (NCI)

Bethesda, Maryland, 20892, United States

Location

MeSH Terms

Conditions

Adrenocortical Carcinoma

Condition Hierarchy (Ancestors)

Adenocarcinoma; Carcinoma; Neoplasms, Glandular and Epithelial; Neoplasms by Histologic Type; Neoplasms; Adrenal Cortex Neoplasms; Adrenal Gland Neoplasms; Endocrine Gland Neoplasms; Neoplasms by Site; Adrenal Cortex Diseases; Adrenal Gland Diseases; Endocrine System Diseases

Study Officials

• Jaydira Del Rivero, M.D.

  National Cancer Institute (NCI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: RETROSPECTIVE
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 21, 2020
• First Posted: April 22, 2020
• Study Start: April 20, 2020
• Primary Completion (Estimated): December 31, 2026
• Study Completion (Estimated): December 31, 2026
• Last Updated: March 12, 2026

Record last verified: 2026-03-10

Locations

US (1)