Terms of Reference
The Global Melanoma Research Network purpose is to:
1) Create a multidisciplinary research network which will foster national collaboration in research and ultimately innovate evidence based care to improve patient outcomes.
2) Create an advisory board that will include representation from decision makers, health care providers and members of GMRN.
3) Conduct methodologically sound research and implement innovative analytic tools that will advance both knowledge and hypothesis generation advancing melanoma research
4) Leverage GMRN for future funding opportunities from Tri-Council grants and others.
Scientific Advisory Board
Purpose: To provide scientific expertise and guidance in relevant disciplines such as epidemiology, health research methodology, bio statistics, health economics, and comparative effectiveness research.
1) To establish guidance documents that provide a framework for analysis and publication
2) To review the scientific merit of request for data access of existing data and requests for new clinical research 3) To develop guidelines on peer-reviewed publications. Conflicts of interest and full disclosure.
4) To advise on future opportunities for research funding, conference and meetings.
Membership: The Medical Head Dr. Scott Ernst One member from executive/steering committee. Three members from Canada External Member Other members to be added or invited as required
Purpose: To provide the strategic planning of the GMRN and to evaluate on a regular basis where the GMRN is with respect to its mission and to address any gaps that may exist in fulfilling those goals. The Steering committee is also expected to implement the strategy at each of their respective sites , to ensure the long term viability and sustainability of the registry. All decisions made by the committee are sought through majority vote. Specifically, the Steering Committee will advise GMRN regarding the following:
1) Funding sources
2) Research Priorities
3) Evaluation of Policies regarding distribution, dissemination and sharing of data and research findings- to be reviewed annually
4) Approval of research proposals involving use of GMRN data
5) Other matters relating to GMRN as deemed appropriate
Membership: Each participating site within the GMRN is granted one seat on the steering committee. This seat is typically filled by the site primary investigator or their delegate. The appointment term for each committee member extends the length of their involvement with the GMRN. Once the participating site no longer contributes to the GMRN at large they are relieved of their committee appointment. Director of the GMRN (chair) Associate Director of the GMRN Project Coordinator of the GMRN Representatives from participating sites (4) External Advisors
The Steering Committee is responsible for:
i. Attending meetings or participating in quarterly telephone conferences as required.
ii. Providing advice to GMRN when requested.
iii. Reviewing the GMRN activity report, research plan and business plan, and providing advice where appropriate.
Meetings: Meetings will occur quarterly (March, June, September, December) by telephone conference and at the call of the chair.
* Applications for Research proposals are accepted at any time, however they are only reviewed by the steering committee during quarterly meetings(March, June, September, and December)
* Research proposals must be completed in full using the GMRN template
* One (1) electronic copy, signed by the site PI is required for proposal submission.
Although the GMRN facilitates the collection of data though the use of a common web-based platform, the ownership of data within the network is retained by each individual site. Each site within the GMRN is represented by a Steering Committee member. All committee members are encouraged to voice concerns or questions regarding the proposed research to be conducted using the GMRN data at large. Each Steering Committee member on behalf of their specific GMRN site can approve, or disapprove, of the use of their site’s data for the proposed research project.
The Committee approaches research proposals at any given meeting with its commitment to fostering productive research uppermost in mind. Typically, rather than reject an application, the Committee encourages researchers to work with the GMRN project manager to prepare a revised proposal that would prove more feasible given the limitations of the data contained within the research network.
It should be noted that approval of the research project does not mean the project will be funded by the GMRN. The Committee will allocate resources as widely and as equitably as possible, in the spirit of encouraging quality research and providing what support it can. While the Committee strongly believes that all research regardless of subject matter is to be encouraged, research embodying the strategic research areas specified by the objectives of the GMRN is especially welcomed. Specific research themes consistent with these strategic areas of focus may be supported through GMRN funds.
All applications should be clear and concise. Applicants are encouraged to contact the GMRN Project Manager if they have any questions or concerns prior to submitting their proposal. Incomplete research proposals received by the Committee will be returned to the applicant for revisions. If the revised application is not received in full by the quarterly Steering Committee meeting, the proposal will not be considered at that time and the proposal will be discussed at the next meeting. Adjudication of the researcher`s proposal will be informed substantially,
but not exclusively, by the researcher’s presentation of research the question and the proposed approach to mining data from the GMRN.
Researchers whose proposals have been approved by the Steering Committee will be notified by email with an official GMRN Proposal Approval document.
Approved research conducted by an investigator within the GMRN may be used for any of the following purposes with the explicit consent of the Steering Committee.
Examples of research use may include, but are not limited to:
* Peer-reviewed publication
* book-length publication
* submission of a proposal to an external research funding agency
* oral and/or poster presentations within juried panels or conferences
* invited public lectures and/or invited addresses
* research-informed commentaries and/or reports of research results published in print media such as newspapers and industry journals/magazines, and/or communication of research results through other broadcast media or public for a (please provide information on programme, topic and date).
* Communication of research results through other than print media (e.g., performance, exhibit, film, CD/DVD).
In the spirit of fostering research and research-based dialogue within the global Melanoma research community, researchers are encouraged to make a commitment to share their research. GMRN will not release complete datasets for an approved research proposal until all outstanding ethical concerns have been resolved and a Certificate of Ethics approval has been issued. Ethics review is completed under the guidelines of the specific institution`s Research Ethics Board (REB) and requires a separate application.
Data Access, USE and Publications
Purpose: To address the process by which registry investigation access and perform analysis of registry data.
1) The access of data must adhere to the research data access and usage guidelines – including signing a data access agreement, which we define through a Participation Agreement
2) All authorships must follow and satisfy conditions of the uniform requirements for manuscripts submitted to Biomedical Journals. (www.icmje.org)
3) Develop a process for reviewing and responding to requests from investigations from both within and outside the GMRN.
Membership: One member from executive/steering committee. Two members from scientific committee, external member or , stakeholder from