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Individual Participant Data Meta-Analysis


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a group evening meal)

       Travel costs or bursaries (taking account of geographical location of studies when costing)

       Accommodation (those travelling long distance may require this pre‐ or post‐meeting)

      Dissemination Costs

       Costs associated with presenting results at relevant conference

       Open access publishing fees

       Production of plain language summaries

       Production of any web or other audio/visual materials

      The above listing covers typical costs, and should be adapted according to the specific requirements of the project.

      Source: Lesley Stewart.

      If IPD are to be obtained from repositories, any costs associated with this need to be incorporated in the budget, including any hidden costs such as a requirement for specialist software or licences to read original data. For example, an IPD network meta‐analysis that wished to use data from pharmaceutical company trials through clinicalstudydatarequest.com was required to have a WHO Drug Dictionary license at an approximate cost of almost £7,000 per sponsor.75

      Costs for any planned patient and public involvement and engagement (PPIE) should be included. These should capture reimbursement of travel and incidental expenses associated with attending meetings and include payment for time preparing for and attending these meetings. Payment for time may be made at a generally accepted rate, for example those recommended by INVOLVE in the UK (available at www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/).80 Because payment to individuals may have implications for their tax or welfare payments, a donation to a patient group or charity may be preferred. For costing purposes it is reasonable to assume that these would be the same amount as would be paid to individuals. Costs associated with advisory group meetings should also be accounted for, for all group members.

      An alternative is to hold a virtual meeting. Although there is not yet a great deal of experience of how successful on‐line meetings are for presenting and discussing IPD meta‐analysis results, with ever‐improving virtual meeting software and with more individuals mindful of environmental sustainability and their carbon footprint, they may ultimately be the best option and help contain the costs of IPD meta‐analysis projects. Furthermore, following the 2020 SARS‐CoV2 pandemic and widespread use of online meeting software to host meetings and conferences, virtual meetings have become more commonplace.

      Cancer Research UK

       https://www.cancerresearchuk.org/sites/default/files/cruk_data_sharing_policy_2017_final.pdf

      Cancer Research UK regards it good research practice for all researchers to consider at the research proposal stage how they will manage and share the data they will generate. Therefore, Cancer Research UK requires that applicants applying for funding provide a data management and sharing plan as part of their application. This plan will be reviewed as part of the funding decision.

      European Research Council

       https://erc.europa.eu/sites/default/files/document/file/ERC_info_document‐Open_Research_Data_and_Data_Management_Plans.pdf

      Grantees to provide information on how their data sets can be accessed, including the terms‐of‐use or the licence under which they can be accessed and re‐used, and information on any restrictions that may apply. It is also important to specify and justify the timing of data sharing. This could be, for example, as soon as possible after the data collection, or at the end of the project. For data that underlie publications it could be, for example, at the time of publication or pre‐publication.

      National Institutes of Health

       https://grants.nih.gov/grants/policy/data_sharing/

      In NIH’s view, all data should be considered for data sharing. Data should be made as widely and freely available as possible while safeguarding the privacy of participants, and protecting confidential and proprietary data. To facilitate data sharing, investigators submitting a research application requesting $500,000 or more of direct costs in any single year to NIH on or after October 1, 2003 are expected to include a plan for sharing final research data for research purposes, or state why data sharing is not possible.

      Medical Research Council