Registration and Informed Consent Study for the Childhood Cancer Research Network

Study Overview
=================
Brief Summary
-----------------
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.

Detailed 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

Official Title
-----------------
Protocol for Registration and Consent to the Childhood Cancer Research Network - A Limited Institution Pilot

Conditions
-----------------
Unspecified Childhood Solid Tumor, Protocol Specific

Intervention / Treatment
-----------------
* Procedure: cancer prevention intervention
* Procedure: educational intervention


Participation Criteria
=================
Eligibility Criteria
-----------------
DISEASE CHARACTERISTICS: Child (< 21 years of age) with newly diagnosed cancer PATIENT CHARACTERISTICS: Not specified PRIOR CONCURRENT THERAPY: Not specified

Ages Eligible for Study
-----------------
Maximum Age: 20 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
No

Study Plan
=================
How is the study designed?
-----------------

Design Details

Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Stratum 1: No Consent for personal identification<br>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. | Procedure: educational intervention<br> <br> |
| Experimental: Stratum 2: Consent for personal identification - No Contact<br>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 | Procedure: cancer prevention intervention<br> <br> Procedure: educational intervention<br> <br> |
| Experimental: Stratum 3: Consent for personal identification - Contact<br>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 | Procedure: cancer prevention intervention<br> <br> Procedure: educational intervention<br> <br> |

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Informed consent collection to register with the Childhood Cancer Research Network |  |  | 
| Informed consent collection for possible participation in future non-therapeutic research studies |  |  | 
| Facilitation of systematic registration into the Childhood Cancer Research Network |  |  | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
unspecified childhood solid tumor, protocol specific