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| Name | Class |
|---|---|
| Hyundai Hope On Wheels | OTHER |
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Purpose: This study aims to create a registry of childhood, adolescent, and young adult patients with cancer (<40 years-old at cancer diagnosis), entitled the 'UNC Childhood, Adolescent, and Young Adult Cancer Cohort' (UNC-CAYACC). This resource will serve to support cancer outcomes research among pediatric and young adult cancer patients with a primary focus on enrolling patients treated as adolescents or young adults (AYAs, 15-39 years).
Procedures: As appropriate for age, participants will complete physical and cognitive functional assessments; questionnaires to assess health-related quality of life and other patient-reported outcomes; will undergo body composition and anthropometric measurements; and will be asked to provide biospecimens for biobanking. Assessments will be collected (as possible) at diagnosis, during active treatment, following treatment completion, and annually in survivorship to assess outcomes throughout the treatment and survivorship trajectory. Sociodemographic and clinical information such as cancer treatment modalities and cumulative doses will be collected by medical record abstraction. Participants will be eligible to enroll at any time from diagnosis through survivorship. This registry will provide data to better understand the manifestations of accelerated aging and key contributing factors among children, adolescents, and young adults with cancer.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| UNC-CAYACC | Children, adolescents, and young adults diagnosed with cancer before the age of 40 enrolled at any point during the diagnosis-treatment-survivorship continuum. |
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| Measure | Description | Time Frame |
|---|---|---|
| Registry development | Creation of a registry of pediatric and young adult patients with cancer treated within the University of North Carolina Health System | Five years |
| Functional assessments | Assess feasibility for completing repeated physical and cognitive functional assessments among young cancer survivors. These assessments include measures of physical and general frailty. | Five years |
| Measure | Description | Time Frame |
|---|---|---|
| Collection of sociodemographic, cancer, and treatment variables | Assess feasibility for collection of sociodemographic (including social determinants of health), cancer (e.g., site and stage), and treatment (e.g., modalities and cumulative doses) variables using patient questionnaires and medical record abstraction. | Five years |
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Inclusion Criteria:
Exclusion Criteria:
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Child, adolescent, and young adult (0-39 years-old at diagnosis, 1-39 years at enrollment) patients with cancer who will undergo or have undergone treatment or receive follow up care at the NC Children's Hospital, the NC Cancer Hospital, or one of the UNC Health affiliated clinical sites.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Andrew Smitherman, MD | Contact | 919-966-1178 | andrew_smitherman@med.unc.edu | |
| Lauren Lux, MSW | Contact | 984-974-8686 | lauren_lux@med.unc.edu |
| Name | Affiliation | Role |
|---|---|---|
| Andrew Smitherman, MD | University of North Carolina, Chapel Hill | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of North Carolina at Chapel Hill | Recruiting | Chapel Hill | North Carolina | 27599 | United States |
De-identified aggregate data will be available upon request. De-identified or coded individual data from the registry may be made available upon request following completion of necessary data use agreements and with Institutional Review Board (IRB) approval.
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Data use inquiries should be directed to Andrew Smitherman, MD at andrew_smitherman@med.unc.edu. Requests will be reviewed and final decisions on release of data made by the UNC-CAYACC Governance and Data Sharing Committee.
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| ID | Term |
|---|---|
| D009369 | Neoplasms |
| D009362 | Neoplasm Metastasis |
| ID | Term |
|---|---|
| D009385 | Neoplastic Processes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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Up to 22.5 milliliters of peripheral blood
| Collection of patient-reported outcome measures |
Assess feasibility for the repeated collection of patient-reported measures of health-related quality of life, health behaviors, and functional status. |
| Five years |