Measurement of altered CTCF binding in cancer using ChIP-seq

About This Policy Belgian Volition SRL ("Volition") has deposited one or more controlled-access datasets of genetic and phenotypic data with the European Genome-phenome Archive ("EGA"), a secure archive jointly operated by the European Molecular Biology Laboratory ("EMBL") and the Centre for Genomic Regulation ("CRG"). This Data Access Policy ("Policy") sets out who may apply for access to those datasets, on what terms, and how applications are reviewed. EGA does not grant or deny access. All access decisions are made exclusively by Volition's Data Access Committee ("DAC"). EGA implements DAC decisions and provides the infrastructure through which approved users download data. This Policy is a public-facing summary. Approved users are bound by the full terms of the Volition Data Access Agreement ("DAA"), which must be signed before access is granted. ________________________________________ Data Use Conditions (DUO Codes) The following GA4GH Data Use Ontology codes apply to these datasets. Prospective applicants should review these codes carefully before applying, as they define the conditions under which access may be granted. DUO Code Shorthand Meaning What this means for applicants DUO:0000006 HMB Health/Medical/Biomedical Research Use is allowed for health, medical, and biomedical research purposes. This does not include the study of population origins or ancestry. DUO:0000015 NMDS No General Methods Research Use does not permit methods development research (e.g., development of software or algorithms) as a primary purpose. DUO:0000018 NPUNCU Not for Profit, Non-Commercial Use Only Use is limited to not-for-profit organisations. Use is limited to non-commercial purposes. The data may not be used to generate revenue, develop commercial products or services, or support for-profit activities, regardless of the applicant's organisational status. DUO:0000019 PUB Publication Required Approved users agree to make results available to the wider scientific community. DUO:0000024 MOR Publication Moratorium Users agree not to submit global analyses for publication until the moratorium period has elapsed. DUO:0000027 PS Project Specific Restriction Use is limited to the approved research project described in the application. DUO:0000028 IS Institution Specific Restriction Use is limited to the approved institution named in the application. DUO:0000026 US User Specific Restriction Use is limited to the named authorised personnel listed in the application. DUO:0000020 COL Collaboration Required Approved users must agree to collaborate with Volition on the relevant study, including with respect to data interpretation and publication. Eligibility To be eligible for access, the purpose of the application must comply with the above Data Use Conditions and meet all of the following criteria: 1. Research purpose. The proposed use must constitute a legitimate health, medical, or biomedical research purpose. Research into population origins or ancestry is not permitted. Data may not be used for commercial purposes without Volition's prior written consent. 2. Institutional affiliation. The applicant must be affiliated with a recognised research or academic institution and must hold a verifiable institutional email address. Applications from individuals without institutional affiliation will not be considered. 3. Non-profit organisation. The applicant's institution must be a not-for-profit organisation.. Commercial entities and for-profit organisations are not eligible to apply without Volition's prior written consent. 4. Non-commercial use. The proposed use of the data must be non-commercial in nature. The data may not be used to generate revenue, develop products or services for sale, or otherwise support for-profit activities. This restriction applies to the nature of the use itself, regardless of whether the applicant's institution is a not-for-profit organisation. 5. Bona fide researcher. The applicant (Principal Investigator) must be an appropriately qualified researcher. The DAC will verify credentials via publicly available sources such as PubMed, ResearchGate, or institutional websites. 6. Collaboration agreement. Applicants must confirm in writing their agreement to collaborate with Volition as part of their application. 7. Ethics approval. Where the proposed research requires ethics board or institutional review board ("IRB") approval in the applicant's jurisdiction, evidence of such approval must be provided. 8. Data security. The applicant's institution must have appropriate technical and organisational measures in place to protect the data in accordance with the minimum security standards set out in the DAA. How to Apply 1. Create an EGA account. If you do not already have one, register at ega-archive.org. 2. Submit a data access request. Navigate to the dataset page on EGA and submit a request. You will be asked to provide: 2.1. a project title and scientific abstract (maximum 500 words) describing the research question, aims, methods, and intended duration; 2.2. details of the applicant and the not-for-profit organization to which the applicant is affiliated; 2.3. a list of all authorised personnel who will access the data, including names, job titles, institutional email addresses, and the supervising Principal Investigator; 2.4. a list of individuals who require EGA accounts for data download; 2.5. evidence of relevant research credentials (up to three recent publications, or a description of relevant expertise); and 2.6. evidence of ethics or IRB approval, where required; and 2.7. the signed Data Access Agreement. 3. Sign the DAA. Download the Data Access Agreement from the dataset page. Complete and sign it, then upload the signed copy as part of your application. 4. Collaboration confirmation. Include written confirmation in your application that you agree to collaborate with Volition's Principal Investigator(s) on the study. Application Review Applications are reviewed by Volition's DAC in accordance with its Terms of Reference. The DAC aims to respond to all applications within 14 calendar days of receipt. Decisions are based solely on scientific and ethical criteria aligned with the informed consent under which the data was collected. The DAC will not deny access on grounds of scientific competitiveness. Where further information is required, the DAC will contact the applicant directly. ________________________________________ Criteria for Approval The DAC will approve an application if: 1. the proposed use is consistent with the original informed consent; 2. the proposed use is consistent with the above Data Use Conditions 3. the applicant is a bona fide researcher with appropriate qualifications and institutional affiliation; 4. the applicant's institution has adequate data security arrangements; 5. the signed DAA has been received; 6. the applicant has confirmed their agreement to collaborate with Volition; 7. there is no record of prior non-compliance with a data access agreement by the applicant or their institution; and 8. the application is otherwise consistent with this policy. ________________________________________ Grounds for Rejection The DAC may refuse an application where: 1. the proposed use falls outside the scope of the original informed consent under which the data was collected; 2. the proposed use is inconsistent with the above Data Use Conditions 3. the applicant lacks verifiable institutional affiliation; 4. the scientific justification is insufficient or implausible; 5. the proposed data security arrangements are inadequate; 6. there is a prior record of breach of a data access agreement; 7. the proposed use carries a material risk of re-identifying research participants or breaching applicable data protection law; 8. the applicant has not confirmed agreement to collaborate with Volition's Principal Investigator(s); 9. required ethics or IRB approval has not been obtained or evidenced; 10. other ethical reasons; or 11. the application is otherwise inconsistent with this policy If an application is rejected, the applicant will be notified with reasons tied to the specific terms of the DAA or this Policy. ________________________________________ Appeals Applicants who receive a rejection may submit a written appeal to the DAC within 30 calendar days of the notification. The appeal must set out the grounds on which the applicant contends the rejection was incorrect and provide any additional supporting evidence. The DAC will convene a review panel of at least two members not involved in the original decision. A response will be provided within 30 calendar days of receipt of the appeal. The appeal panel's decision is final. ________________________________________ Conditions of Approved Access Approved users are bound by the full terms of the DAA, including: 1. use of the data solely for the approved project and Research Purposes; 2. restriction of access to named authorised personnel only; 3. implementation and maintenance of appropriate data security measures; 4. agreement to observe the publication moratorium period specified in Appendix C of the DAA; 5. acknowledgement of Volition and the Data Producers in all publications; 6. notification of the DAC of any security incident within 72 hours of discovery; 7. destruction or return of all data upon request or at the end of the approved project; and 8. ongoing collaboration with Volition's Principal Investigator(s) in accordance with the COL DUO code. External collaborators wishing to access the data must submit a separate application and sign their own DAA before any data is shared with them. ________________________________________ Contact For questions about this Policy, the application process, or data access decisions, please contact Volition's Data Access Committee at: DAC@volition.com. All EGA studies and datasets referenced in publications must be publicly searchable on the EGA website before the paper is released. If you are preparing a publication using data accessed under this Policy, please notify the DAC in advance.