Data Sharing Requests

Consistent with the policies of the National Institutes of Health (NIH), Children’s Oncology Group (COG) considers requests for individual patient data for use in research projects. Use of this data from one or more COG studies requires a formal request in the form of a brief proposal, as outlined below.

How to Request COG Data

Requests for data are typically considered after the primary study results have been published. However, requests may be considered earlier if publication of the primary study is significantly delayed.

To submit a request, investigators must complete the COG Database Project Request Form opens in a new tab.

COG conducts an internal review to assess the scientific merit and feasibility of the proposal, including whether sufficient data are available to support the analysis. A decision will be provided in writing within 6 weeks of receiving the request.

If a request is denied, COG will provide the reason for the decision, and the request may be appealed. Approved requests are subject to COG’s data release conditions.

Release Conditions & Disclaimers

Before data can be released for research purposes, the following conditions must be met. A formal COG Data Use Agreement (DUA) is also typically required.

  • Investigators must agree to use the data only for the approved research project. If the investigator later wishes to use the data in a new project, a new proposal must be submitted. Use of data for purposes not expressly authorized by the approved research project constitutes a breach of the agreement.
  • Investigators must agree to keep the individual patient data confidential. The data may only be shared within the team conducting the analysis. Requests from other individuals for access to the data must be refused and referred to the COG.
  • The regulatory requirements discussed in the Regulatory Considerations section of the COG Data Sharing Policy must be met.
  • In situations where a complex data set is required, a fee may be charged.
  • Copies of all manuscripts arising from the project associated with the data request must be sent to COG for review (email pubs@childrensoncologygroup.org). However, approval of the manuscript is not a condition for use of the data.
  • If the data are being provided for a project being conducted by a COG investigator, then all other relevant COG Group policies apply, particularly those relating to authorship and review of abstracts and manuscripts. If the data are being provided for an independent (non-COG) project, then there is no expectation that members of COG have authorship, unless COG members have made substantial contributions to the project.
  • Release of data collected in a clinical trial conducted under a binding collaborative agreement between the NCI Cancer Therapy Evaluation Program (CTEP) and a pharmaceutical/Biotechnology Company must be in compliance with the terms of the binding collaborative agreement and must be approved by CTEP and the company. Release of the data is also subject to the terms of any contracts between COG and other entities, which cover any of the requested data.
  • In releasing the data, COG makes no representations and extends no warranties of any kind, either expressed or implied. There are no expressed or implied warranties of merchantability or fitness for a particular purpose, or that the use of the data will not infringe any patent, copyright, trademark, or other proprietary rights. No indemnification for any loss, claim, damage, or liability will be intended or provided.

Appeals Process

Applicants may appeal a denied request for data. Appeals are reviewed by the COG Group Chair, NCI/CTEP’s program officer, and an outside statistician. The statistician is named jointly by the COG Group Chair and the NCI/CTEP program officer.