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FAQ

 

This page provides answers to questions you might have when considering to be an Associated Member of the HARMONY Alliance.

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1. Can I, as an Associated Member, submit a Research Proposal?

Yes. Associated Members are an integral part of the HARMONY Alliance. Therefore, any Associated Member with a relevant data contribution to the HARMONY Platform can submit a bench-to-bed research proposal for evaluation. As an Associated Member, you will also participate in the formulation of relevant research questions, defining new study outcomes and endpoints, and identifying specific markers for new treatment targets. More information on how to become an Associated Member of the HARMONY Alliance, click here >

2. How are HARMONY Research Proposals selected?

All Research Proposals undergo a review and evaluation procedure by peer experts of the HARMONY Alliance. Clinicians, scientists, statisticians, and bioinformaticians from academia and industry team up with health economists, regulatory agencies, patient association representatives, and ethics experts. Together, they aim to assess the significance of the unmet medical needs covered by the research, guarantee the scientific and socioeconomic merits of the proposal, ensure compliance with legal and ethical requirements and make sure that the study will work toward optimizing patient care. If the research proposal receives a favorable evaluation and is found to be viable in terms of the required resourcing, it will be put into the pipeline.

3. Is there any financial compensation for the effort incurred by the Associated Member in providing data?

HARMONY does not pay for data. However, the HARMONY Alliance will reimburse Associated Members for the costs and effort associated with making your data available for the Platform (such as costs related to anonymization activities, data curation, and harmonization, data handling, etc.). This is done on a case-by-case basis with each of the Associated Members after the data is evaluated through a mechanism of data quality assessment. We must ensure that the data meet technical, legal, and clinical requirements.

4. What data is HARMONY looking for?

The HARMONY Big Data Platform offers a wide range of anynomized data such as: DEMOGRAPHIC AND MEDICAL HISTORY DATA, DIAGNOSIS DATA, OMICS DATA, TREATMENT DATA, Quality of Life DATA, HEALTHCARE ECONOMIC RESOURCES DATA. 

5. Are there specific transfer requirements to provide the data?

The security and privacy of your data are paramount for HARMONY. For that reason, HARMONY has invested in a security program for data transfer and management. The submission of any information by the Associated Member to the HARMONY Platform for the intake process will be made through a secure transmission transfer protocol.

6. Will HARMONY want my data to be shared in a specific format?

Yes. Your data sources must be delivered in a digital format that is understandable (talking in computer terms),  well-formed, and able to be read and analyzed by the intake process. Acceptable formats are: CSV (comma-separated values); XLS (Microsoft Excel format); SAS Data Format. All these documents could be compressed in zip, tar, targz, or 7zip format.

7. Who will be the owner of the data I have provided to the HARMONY Platform?

The data owned or the contributions developed by the Associated Member shall remain the property of the Associated Member. However, the AM is expected to grant access rights to the contributed data for research use on royalty-free conditions.

8. Will I have access to the results generated by my data?

Yes, the Associated Member will be granted access rights for research use to the results on royalty-free conditions.

9. How do I request a user account on the HARMONY Big Data Platform? 

Any official HARMONY Partner or Associated Member with a specific need (i.e. prepare a project proposal, see what data is there, etc.) can be granted access. The request must be submitted by the main representative of the HARMONY Partner or Associated Member Organization, with indications about who will be accessing and for what reason. A request submitted by another member of the institution may be accepted provided that the main representative is in copy.  If you are interested in contributing to HARMONY in some form other than providing data, please contact Harmonyoffice@ibsal.es. 

10. How do I apply for workspace and have data access at the HARMONY Big Data Platform

There is a special request form reserved for study submitters/study coordinators/principal investigator (PI) in order to carry out the required analysis in relation to an approved research question. Therefore, it can only be requested by the PI of such research question, or the technical representative selected by the PI. If you are interested in contributing to HARMONY in some form other than providing data, please contact Harmonyoffice@ibsal.es. 

11. I am not a Data Custodian. Can I still support HARMONY?

Yes. HARMONY is an open initiative, and we have established mechanisms to enroll other stakeholders. A Policy Health Stakeholder Feedback Forum (PHSFF, ‘Stakeholder Forum’), has been set in the framework of HARMONY as the key platform of interaction and consultation of 6 stakeholder clusters: patient organizations, hematologists, medicines authorities, HTA bodies, payers, and the pharmaceutical industry. A cluster leader chairs each cluster.

If you are interested in contributing to HARMONY in some form other than providing data, please contact Harmonyoffice@ibsal.es. 

12. How will I get visibility from HARMONY?

Associated Members are an integral part of our pioneer Network of Excellence in Hematology. The benefits of formalizing a relationship with the HARMONY Alliance as an Associated Member include obtaining exposure for your organization in the hematological community, furthering your existing relationships in the community, and reaching out to all forums connected to HARMONY.

You will also:

13. How can I stay updated on the HARMONY Alliance?

Connect with us on social media and the HARMONY website!