Access

How to gain access to EPIC data and/or biospecimens following approval from the EPIC Steering Committee?

Once the request has been approved by the EPIC SC, the user must complete the following steps to gain access to EPIC data and/or biospecimens:

  • The IARC Ethics Questionnaire must be submitted to the IEC for ethical approval.

  • For studies where data and biospecimens are requested
    • - Subject to ethics approval by the IEC, a Biobank Request Form (CIRC 68 11/2013) must be completed by the user and sent to the IARC Biobank. In addition, a request should be prepared in collaboration with the EPIC contact (e.g. Working Group Chair) to gain access to the relevant data that will be prepared at IARC. These documents will enable the IARC Biobank to prepare the requested samples and the related MTA (CIRC 70 12/2013).
    • - Research on EPIC data and/or biospecimens follows the above-mentioned principles and is governed by the Material Transfer Agreement (CIRC 70 12/2013), which must be signed by the user and a legal representative of the research organization of the user.
    • - Upon receipt of the signed MTA and payment of relevant sample access charges, the IARC Biobank will proceed with shipment of the samples for the project.

  • For studies where data only are requested:
    • - Subject to ethics approval by the IEC, a request should be prepared in collaboration with the EPIC contact (e.g. Working Group Chair) to gain access to the relevant data that will be prepared at IARC; these will enable IARC to prepare the requested data and the related DTA (CIRC 71 01/2014).
    • - Research on EPIC data follows the above-mentioned principles and is governed by the Material Transfer Agreement (CIRC 71 01/2014, which must be signed by the user and a legal representative of the research organization of the user.
    • - Upon receipt of the signed DTA, IARC will proceed with preparation of the relevant data for the project.

The requested data and/or biological samples will be made available for use in a timely and responsible manner, taking into account the need to assure data validity and sample integrity.


During the study

The user must
  • Accept and undertake research in the context of the ownership of samples and data as stipulated in the IARC MTA (CIRC 70 12/2013) or DTA (CIRC 71 01/2014);
  • Provide plans for publication of the study results in peer-reviewed journals within 2 years of reception of the data and/or biospecimens (or clear justification for the requirement of a longer period);
  • For studies where biospecimens are being used, report on progress made within the project (using form CIRC 69 11/2013), every 6 months until completion of the study and remaining samples, if any, have been returned to IARC (as stipulated in the MTA/DTA);
  • Ensure compliance with the terms and conditions of the MTA. Users found to be in breach of the MTA will be denied future access to EPIC data and biospecimens.

At the end of the study

The user must
  • Report on the outcome of the study upon completion, including publications (using form CIRC 69 11/2013); return any unused samples to IARC, unless otherwise stated in the MTA (CIRC 70 12/2013);
  • If requested, provide EPIC/IARC with a copy of the derived data that have been generated within the project through use of the EPIC data and/or biospecimens (raw data or other relevant format as agreed upon with the EPIC SC) within 2 years of receiving the data and/or biospecimens.

Acknowledgment in publications

In addition to acknowledging the ECs by complying with the EPIC authorship guidelines, the user must acknowledge the sources of all biological resources in any publication that arises from access to, and use of, the IBB resources, including EPIC biospecimens. All publications must include at a minimum the following acknowledgement: “The research was made possible using the data/samples provided by the IARC Biobank”.