Publicly Funded DSPs
There are a growing number of publicly funded data service providers (DSPs) that provide a service to researchers and their engaged delivery sites with a view to providing efficiencies in planning, management and delivery of research. The Find, Recruit & Follow-up (FRF) service provides a resource of information on a growing number of DSPs which in turn is useful for providing researchers with options for their consideration. This section lists some of those DSP examples with links to the information collated for us by the FRF service.
Find, Recruit & Follow-up (FRF)
More information on the Find, Recruit & Follow-up service can be found within our National Digital Services section here
Find out how our ROST team are helping with the launch of FRF within our Latest News & Case Studies section here
NHS DigiTrials
Service description: Clinical trials help researchers to develop treatments to improve health and care. NHS DigiTrials plays an important role in clinical trials. We provide secure data about people's health and care to researchers. They must go through a strict approvals process before receiving any data.
NHS DigiTrials is made up of four services that support clinical trials:
Feasibility Service - Works out if there are enough suitable people in England to take part in a particular trial but does not identify individuals
Recruitment Service - Uses patient information to identify people who might be suitable for a certain trial - and contacts them to see if they would like to take part
Communication Service - Keeps trial volunteers, who have consented to receive this information, updated about the progress and results of their trial
Outcomes Service - Uses patient information for a period of time (agreed with the trial organisation) to show the long-term impact of treatments
(NHS DigiTrials homepage)
Portfolio studies utilising this DSP option: Case studies concerning how this resource has aided trial delivery can be accessed here.
Clinical Practice Research Datalink (CPRD)
Service description: Clinical Practice Research Datalink (CPRD) is a real-world research service supporting retrospective and prospective public health and clinical studies. CPRD research data services are delivered by the Medicines and Healthcare products Regulatory Agency with support from the National Institute for Health and Care Research (NIHR), as part of the Department of Health & Social Care.
CPRD collects anonymised patient data from a network of GP practices across the UK. Primary care data are linked to a range of other health related data to provide a longitudinal, representative UK population health dataset. The data encompass 60 million patients, including 18 million currently registered patients.
CPRD website homepage
NIHR portfolio studies utilising this DSP option:
Study Title: DaRe2THINK IRAS ID: 290420
CPRD Article: Daring to think of data-driven tools for clinical trial recruitment
Study Website: Accessible here
Join Dementia Research (JDR)
Service description: The Join Dementia Research service allows you to see if a study is feasible, and to access thousands of potential volunteers across the UK who want to work with researchers. If you’re enrolled as a researcher on our database, you’ll be able to search for volunteers who meet your particular study criteria – such as diagnosis, location and age. When potential volunteers are matched with your study, you’ll be able to both screen them and contact them directly.
Participant recruitment within the necessary timescale is vital to the success of any research study. Our national database includes patients who have already been diagnosed, as well as their families, carers and other members of the public. Everyone registered on the service has agreed to take part in research, so the service provides an efficient way of reaching interested participants.
(Join Dementia Research website - Researchers section)
Portfolio studies utilising this DSP option:
Study Title: The DemCon Study IRAS ID: 318255 Study Title: The DemCon Study Phase 3 IRAS ID: 331985
Study Website: Accessible here
Primary Care Research Informatics & Digital Environment Solutions (CRN PRIDES)
Service description: Primary care in the NHS has the enviable advantage of comprehensive longitudinal records for millions of patients. Within this resource is a wealth of digital data which can be retrieved to allow accurate retrospective identification of patient populations. In addition most primary care clinical software has the ability to identify patients who might be eligible for a research study in real time as they present in a consultation. Digital Solutions allow us to access this data for research purposes.
The PRIDES Service offers researchers and GP practices support and advice on how best to use digital solutions to deliver studies in primary care settings. We work closely with key stakeholders to support the development of research solutions and tools for use in GP Practices.
PRIDES is delivered by the NIHR Clinical Research Network (CRN) and one of our main aims is to help study teams to develop health informatics for patient identification and recruitment. We also offer access to a range of resources to help you deliver your study to time and target.
Portfolio studies utilising this DSP option:
The Recruitment Optimisation Support Team (ROST) represents our CRN WM PRIDES service offer. ROST has supported a vast amount of Primary Care studies to recruit successfully in our region and beyond.
To learn more about some of the studies ROST have supported, please visit our Latest News & Case Studies section here
NIHR BioResource
Service description: We support health research by recruiting and maintaining a resource of data and samples donated by over 200,000 volunteers. We can also recall those volunteers to participate in further research based on specific genetic data or health and lifestyle criteria as set by researchers.
We recruit in three Cohorts. They are rare diseases, common diseases and healthy population. Due to the specialist work needed to support COVID-19 research we have a special section for that too. Our 18 local centres bring together participants, university and NHS staff and commercial researchers. Our centres also help to recruit participants. We coordinate the samples, data and analysis that drive growing knowledge to take research from the bench to the bedside. We collaborate with more than 100 NHS Trusts.
(NIHR BioResource website)
Studies utilising this DSP option: Studies utilising the NIHR BioResource can be searched here
Be Part of Research (BPoR)
Service description: Be Part of Research helps people to find and take part in a wide range of health and social care research, taking place at locations across the UK. Our service is designed to make it easier for researchers and potential study participants to find each other. Be Part of Research now provides the first UK-wide registry for all health and care specialties. It gives researchers and sponsors free and easy access to research-engaged volunteers from across the UK - enabling study teams to recruit more quickly and effectively.
For your trial or study to be included in the study search function of this website, it must be listed on ISRCTN, ClinicalTrials.gov, or on the NIHR Clinical Research Network (CRN) Central Portfolio Management System (CPMS). For studies that are listed on CPMS and one other register (ISRCTN or ClinicalTrial.gov), duplications are removed where possible. Once your study is listed on either ISRCTN or ClinicalTrial.gov, it will take up to a week for your study to be automatically loaded onto Be Part of Research.
(Be Part of Research Website)
Portfolio studies utilising this DSP option: Studies listed within this resource are searchable here.
SAIL Databank (data from Wales)
Service description: SAIL provides a rich and trusted data resource, exceptional in many respects, supporting research for patient and public benefit: a vital facility for interdisciplinary team science.
Individual identities are always protected in SAIL Databank. Approved researchers can only access anonymised data. TRE’s bring great benefits to the research community and, ultimately, to the public. TRE-enabling technology allows for deep insights and new discoveries by using incredibly rich health or administrative data. TREs allow researchers to work together on society’s biggest challenges by affording them a safe collaborative space with all the necessary software and resources they need.
Our analytical and research support services offer full end-to-end support and can advise on whether SAIL Databank is a good fit for your research question, how best to align your research interests with the available data and customise a package based on your existing knowledge and skills.
(SAIL Website)
Portfolio studies utilising this DSP option: Details of 2 studies utilising data from this resources can be found here.
