Health data is an important resource for supporting much-needed progress in the management of kidney disease, with multiple datasets currently in existence at different locations across the UK. Many researchers will not know what information is held by other teams, or have a simple way to access it, limiting vital research. <\/p>\n
Championed by the UK Renal Health Data Research Network<\/a> (UKRHDRN) and administered by Kidney Research UK and the University of Leicester, the KRDP<\/a> brings details about these datasets together in one searchable listing, allowing researchers to maximise the discoveries from each dataset.\u00a0<\/p>\n\t\t\t\n\t\t\t\t\t\t\tView the portal\n\t\t\t\t\t<\/a>\n\t Health data is a set of information related to a person and their medical conditions, this could include blood test results, details of medications taken and diseased diagnosed, alongside other details such as hospital admissions. Personal details that could identify an individual, including name, date of birth, address and NHS number, are usually removed from health data to protect privacy. This process is known as ‘de-identification’. De-identified information from many individuals can be combined into a dataset, supporting new, improved approaches to diagnosis and treatment. Find out more about health data<\/a>.<\/p>\n Health data allows researchers to look for patterns and trends in big populations, helping us to better understand how and why people respond differently to medications or their disease develops in a particular way. Looking at health datasets may also support new ways to diagnose diseases earlier, or in a less intrusive way, and identify new ways to improve clinical care for patients.\u00a0<\/p>\n There are many health datasets about kidney disease in the UK, but not all researchers know about them. Bringing information about these datasets together \u00a0will make it easier for researchers to identify opportunities for collaboration and has the potential to support crucial new studies benefiting those living with kidney disease.<\/p>\n The KRDP provides a simple platform listing and describing kidney datasets that are currently available in the UK, allowing others to request access to work with this information. The KRDP enables research teams to list information about their datasets, making them discoverable to other investigators. KDRP does not provide access to the data itself but does provide key contact information for each available dataset. There are laws governing use of confidential health data to protect patients and keep your data safe.\u00a0<\/p>\n The KRDP is a searchable listing containing information about healthcare datasets; it does not hold any patient information. The KRDP aims to connect research teams, supporting additional research from existing datasets. Researchers can look through the listing for datasets that might support their studies or share their own information. If an investigator would like access to a dataset to support their research, they must apply directly to the group who created it.\u00a0<\/p>\n Anyone can access the KRDP and view the listings, but only approved researchers whose studies are signed off by the appropriate ethics committees, with appropriate data governance in place will be able to access and work with datasets. This process is not overseen by the KRDP but is the responsibility of the research groups who develop and hold the datasets.\u00a0<\/p>\n View the KRDP.<\/a><\/p>\n\t\t\t\t\tWho owns the data listed in the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t The KRDP only lists metadata, this is information that describes the type of data held in each dataset. This could be age, cause of kidney disease and number of people involved, among other categories. The datasets themselves remain with the research group who created them, and they own the data.<\/p>\n\t\t\t\t\tCould I be identified from the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t No, the KRDP only lists information about the datasets as a whole and contains no personal information on individuals.\u00a0<\/p>\n\t\t\t\t\tWho checks that the researchers will only carry out acceptable studies? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t Once a dataset of interest has been identified by a researcher, they will need to gain governance approvals from their own institution and the institution (usually a University or NHS hospital) who owns the dataset. This process is designed to ensure that patient information is used in a safe and acceptable way.<\/p>\n\t\t\t\t\tWhat research has the KRDP supported? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t The KRDP was launched in March 2023, we will share news of any resulting studies on the Kidney Research UK <\/a>website.<\/p>\n\t\t\t\t\tWhere can I find out who is using the data? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\tHow can I have my data removed from a dataset? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t Datasets are administered, and overseen, by the group who created them. They will be able to support questions form participants.<\/p>\n\t\t\t\t\tDo researchers pay to use the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t No, there is not a charge associated with using the KRDP.<\/p>\n\t\t\t\t\tWho would benefit financially from any discoveries that may result from using the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t The legal agreements put in place when the original dataset was created would apply to any future studies, subject to ethics approval. The KRDP will not receive any financial benefit from resulting collaborations.<\/p>\n A simple, intuitive approach to discovering data\u00a0<\/strong><\/p>\n With searchable fields including dataset type, keywords and population size, the KRDP allows researchers to investigate listings of renal datasets. If a dataset of interest is identified, contact details for the dataset owner can be requested. All arrangements relating to ethical approval and data sharing must be undertaken in accordance with legal requirements and local policy, with the dataset owner.<\/p>\n We also encourage dataset owners to include metadata relating to their studies via the KRDP, in order to maximise the benefit for those patients who generously donated their information. Data owners have the option to share their listings on the HDR UK Innovation Gateway in the future, further enhancing their visibility.<\/p>\n You can access the KRDP here<\/a>.<\/strong><\/p>\n You are able to view and search the KRPD<\/a> without a registration, but will need to register to access dataset owner contact details.<\/p>\n\t\t\t\t\tHow do I find out details of the legal agreements in place for a dataset? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t All legal details relating to a dataset are held by the dataset owner. The KRDP can provide contact details for this.<\/p>\n\t\t\t\t\tWho arranges access\/sharing agreements for datasets listed on the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t This process is the joint responsibility of the data owner and group applying for access.\u00a0All users must adhere to the legal regulations for data use.\u00a0<\/p>\n\t\t\t\t\tIs there a cost associated with using the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t The KRDP does not charge any fees for use of the portal. Charges associated with data curation, federation or access be agreed with the dataset owner.<\/p>\n\t\t\t\t\tHow do I list my dataset on the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t You can add your data sets to the KRDP here.<\/a><\/strong><\/p>\n\t\t\t\t\tWould my institution\/research group be acknowledged in any publications that result from sharing my dataset? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t All legal agreements are the responsibility of the data owner (controller). We encourage transparency in all data research and would recommend that an acknowledgement is agreed prior to the commencement of any collaborations or data sharing.<\/p>\n\t\t\t\t\tCan listed datasets be linked? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t This will vary dependant on the nature of the dataset, the consent obtained for the study And will require discussion with the data owner. Details should be sought from the data owner using the contact information provided on the KRDP.<\/p>\n\t\t\t\t\tWho would benefit financially from any discoveries that may result from using the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t The legal agreements put in place when the original dataset was created would apply to any future studies, subject to appropriate governance procedures. The KRDP will not receive any financial benefit from resulting collaborations.<\/p>\n\t If you have a question or would like to chat about the Kidney Research Data Portal, the team here at Kidney Research UK are happy to help. Please get in touch.<\/p>\n\n","protected":false},"excerpt":{"rendered":" Kidney Research Data Portal (KRDP) Health data is an important resource for supporting much-needed progress in the management of kidney disease, with multiple datasets currently in existence at different locations across the UK. Many researchers will not know what information is held by other teams, or have a simple way to access it, limiting vital…<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":162,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"class_list":["post-115934","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nWhat is health data?<\/h2>\n
\n\t\tInformation for patients\n\t<\/h2>\n\t
\n\t\tFrequently asked questions\n\t<\/h3>\n\t\t\t\t\tHow do you access the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t
\n\t\tInformation for researchers\n\t<\/h2>\n\tDesigned to facilitate collaboration and maximise the impact of existing UK-based kidney disease datasets, investigators can search for datasets, and share their own information, via the KRDP.\u00a0<\/strong>
\n\u00a0<\/strong>
\nKidney investigators can use KRDP to provide core metadata describing their dataset(s), making them visible on the KRDP platform. In the future, investigators will have the option to request that their datasets are also listed on the HDR UK Innovation Gateway. Researchers are also invited to explore the available datasets and to use the contacts listed to request access to listings of interest.\n\n\t\tFrequently asked questions\n\t<\/h3>\n\t\t\t\t\tDo I need to register for access to the KRDP? <\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t
Got a question? Get in touch.<\/h2>\n\t