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These datasets and protocols are published on behalf of the Department of Health and Social Care, who have the written agreement of the named organisations. They are to be considered in conjunction with the Rare Diseases Research Landscape Project report - found here https://openresearch.nihr.ac.uk/documents/3-45.


Please note: These are static datasets created for the purpose of this project, and there are currently no plans to update these datasets.

The primary data set shown in the table is Dataset 1: NIHR Programmes & MRC combined\u00a0

It contains MRC and NIHR programme funding for research on rare diseases, from April 2016 \u2013 March 2022. Using the filter tool on the left-hand side menu, it is possible to filter this dataset to only display awards in the 5-year period that were analysed in the report. See report Section 3.


The dataset includes columns with data relating to Orphanet, Health Research Classification System (HRCS) Health Categories and Research Activity Codes (RAC). For additional information see report Sections 3.2 and 3.3.


Orphanet - report Section 3.2 and https://www.orpha.net/consor/cgi-bin/index.php\u00a0

HRCS Health Categories and RAC - report Section 3.3 and\u00a0 https://hrcsonline.net/\u00a0


There are a further five datasets which are all available as attachments at the bottom of this web-page:


Please note: Datasets 1, 2 and 4 are for an extended 6-year period (to March 2022), whereas the data analysed in the report focuses on a 5-year period (to March 2021), unless stated otherwise.


Dataset 2: NIHR Programmes & MRC combined (includes rare neoplastic diseases and rare infectious diseases)

The portfolio of MRC and NIHR programme funding for research on rare diseases as was defined for the report, from April 2016 \u2013 March 2022\u00a0 (noting that for the majority of the analysis in the report, data from the 2021-22 financial year was not included). This dataset includes awards assigned to the \u2018rare neoplastic diseases\u2019 and \u2018rare infectious diseases\u2019 Orphanet groupings, which were not analysed as part of the report. See report Section 2.1.1.


Dataset 3: NIHR infrastructure schemes supported studies

The portfolio of NIHR funding that supports the physical facilities in which research is delivered and the workforce within those facilities that support the research delivery. This dataset only includes NIHR Coordinating Centre Infrastructure studies supported in the financial year 2020/2021. See report Section 3.6.1.



Dataset 4: NIHR Clinical Research Network supported studies

The portfolio of NIHR funding that invests in research expertise, specialist facilities, a research delivery workforce and support services which support and deliver research. This dataset includes CRN supported studies that were open to recruitment April 2016 \u2013 March 2022 (noting that data from the 2021-22 financial year was not included in the report analyses). See report Section 3.6.2.


Dataset 5: Industry research and development (R&D) projects on rare diseases in the UK (1 April 2016 \u2013 1 April 2021)

This dataset contains the industry R&D projects on rare diseases (not including rare infectious or rare neoplastic diseases) in the UK (1 April 2016 \u2013 1 April 2021) that were sourced from the commissioned search of Clarivate\u2019s Cortellis Competitive Intelligence dataset, and is made available on an as-is basis. See report Section 4.1.


Dataset 6: LifeArc rare disease research portfolio

This dataset contains information about the projects that LifeArc identified in their portfolio that were related to rare disease research in the 2016-2021 time-frame (not including projects on rare infectious or rare neoplastic diseases). See report paragraph 4.2.3.8.


Protocol: This is the protocol that was developed by the Project Group to perform a detailed search of the entire NIHR and MRC portfolios, to identify research funding relevant to rare diseases. This protocol is explained in Annex 1 of the report. There are 5 annexes associated with this protocol in total. Annexes 1, 4 and 5 are in the protocol. Annexes 2 and 3 are provided here as separate csv files.

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