Registration and Informed Consent Study for the Childhood Cancer Research Network

Children's Oncology Group

Status: Completed

Conditions: Unspecified Childhood Solid Tumor, Protocol Specific

Treatments: Procedure: cancer prevention intervention; Procedure: educational intervention

Study type: Interventional

Funder types: NETWORK; NIH

Identifiers

NCT00433394

COG-AADM01P1 (Other Identifier)

AADM01P1

Details and patient eligibility

About

RATIONALE: Collecting informed consent from parents of children with cancer to register with the Childhood Cancer Research Network may help the study of cancer in the future.

PURPOSE: This study is collecting informed consent to register younger patients with cancer into the Childhood Cancer Research Network.

Full description

OBJECTIVES:

• Obtain informed consent from parents (and the child, when appropriate) of children diagnosed with cancer (who are under 21 years of age) to register their child's name and address with the Childhood Cancer Research Network.
• Obtain informed consent from parents (and the child, when appropriate) of children diagnosed with cancer (who are under 21 years of age) to be contacted in the future for possible participation in non-therapeutic research studies involving the parents and/or child.
• Facilitate the systematic registration of pediatric and adolescent patients diagnosed with cancer into the Childhood Cancer Research Network.

OUTLINE: Consent is obtained from parents (and pediatric patients, where applicable) to register the patient's and parent's names and addresses with the Childhood Cancer Research Network, provide a copy of the pathology report to the Network, and contact parents in the future for possible non-therapeutic research studies involving the parents and/or child.

Information provided will be held in strict confidence.

PROJECTED ACCRUAL: Not specified

Enrollment: 2,242 patients

Sex: All

Ages: Under 20 years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

DISEASE CHARACTERISTICS:

• Child (< 21 years of age) with newly diagnosed cancer

PATIENT CHARACTERISTICS:

• Not specified

PRIOR CONCURRENT THERAPY:

• Not specified

Trial design

2,242 participants in 3 patient groups

Stratum 1: No Consent for personal identification

Experimental group

Description:

Data to be collected for this stratum include histology, primary site, treating hospital, and institutional principal investigator. Data will be coded using the North American Association for Central Cancer Registries (N.A.A.C.C.R.) data standards for cancer registries.

Treatment:

Procedure: educational intervention

Stratum 2: Consent for personal identification - No Contact

Experimental group

Description:

Data will be collected for this study include:child's name, parent's name, address, telephone number, child's date of birth, race, ethnicity, histology, primary site, treating hospital, and institutional principal investigator. Data will be coded using the North American Association for Central Cancer Registries (N.A.A.C.C.R.) data standards for cancer registries. No contact for future to ask me to consider taking part in Research Network approved studies

Treatment:

Procedure: cancer prevention intervention

Procedure: educational intervention

Stratum 3: Consent for personal identification - Contact

Experimental group

Description:

Data will be collected for this study include:child's name, parent's name, address, telephone number, child's date of birth, race, ethnicity, histology, primary site, treating hospital, and institutional principal investigator. Data will be coded using the North American Association for Central Cancer Registries (N.A.A.C.C.R.) data standards for cancer registries Someone from the Childhood Cancer Research Network may contact me in the future to ask me to consider taking part in Research Network approved studies

Treatment:

Procedure: cancer prevention intervention

Procedure: educational intervention