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Table 3 Registries and datasets accessed

From: Access to routinely collected health data for clinical trials – review of successful data requests to UK registries

RegistryTotal trialsn = 160Total trials (2017–2018)
n = 91
Datasets accessed
Total trials (2017–2018) n = 91
Death
n = 69
Hospital visits n = 50Cancer registration n = 29Other n = 26
NHS Digital108 (68%)59 (65%)58 (84%)34 (68%)22 (76%)4 (15%)
ISD-Scotland35 (22%)25 (27%)16 (23%)13 (26%)7 (24%)2 (8%)
PHE15 (9%)11 (12%)3 (4%)6 (12%)10 (34%)1 (4%)
SAIL9 (6%)6 (7%)2 (3%)5 (10%)2 (7%)1 (4%)
ICNARC7 (4%)4 (4%)1 (1%)0 (0%)0 (0%)4 (15%)
NWIS7 (4%)6 (7%)1 (1%)6 (12%)1 (3%)0 (0%)
PICANet6 (4%)2 (2%)0 (0%)0 (0%)0 (0%)2 (8%)
CPRD4 (3%)1 (1%)0 (0%)1 (2%)0 (0%)1 (4%)
NHSBT3 (2%)3 (3%)0 (0%)0 (0%)0 (0%)2 (8%)
TARN3 (2%)2 (2%)1 (1%)1 (2%)0 (0%)2 (8%)
NELA2 (1%)2 (2%)0 (0%)0 (0%)0 (0%)2 (8%)
NNRD2 (1%)2 (2%)1 (1%)1 (2%)0 (0%)2 (8%)
PHW2 (1%)1 (1%)0 (0%)0 (0%)0 (0%)1 (4%)
UKRR2 (1%)2 (2%)0 (0%)1 (2%)1 (3%)0 (0%)
ResearchOne2 (1%)2 (2%)0 (0%)0 (0%)0 (0%)2 (8%)
DOH1 (1%)0 (0%)0 (0%)0 (0%)0 (0%)0 (0%)
FFFAP1 (1%)1 (1%)0 (0%)0 (0%)0 (0%)1 (4%)
HBS1 (1%)1 (1%)0 (0%)0 (0%)0 (0%)1 (4%)
NICOR1 (1%)1 (1%)1 (1%)0 (0%)0 (0%)0 (0%)
NICR1 (1%)1 (1%)0 (0%)0 (0%)1 (3%)0 (0%)
OHCAO1 (1%)1 (1%)0 (0%)0 (0%)0 (0%)1 (4%)
UKCFR1 (1%)1 (1%)0 (0%)0 (0%)0 (0%)1 (4%)
  1. Registries accessed was captured for all 160 trials. Information about datasets accessed from these registries was captured only for those 91 accessing routinely collected health data (RCHD) between 2017 and 2018. The fields are not mutually exclusive as one trial may have accessed data from multiple registries, and multiple datasets can be accessed via a single registry. Percentages are calculated by using the column header denominators. Hospital visits includes all Hospital Episode Statistics (Outpatient, Inpatient, Accident and Emergency, and Critical Care), Patient Episode Database for Wales (PEDW), and Scottish Morbidity Records (SMR). Acronyms: Information Services Division (ISD), Public Health England (PHE), Secure Anonymised Information Linkage (SAIL), Intensive Care National Audit & Research Centre (ICNARC), NHS Wales Informatics Service (NWIS), Paediatric Intensive Care Audit Network (PICANet), Clinical Practice Research Datalink (CPRD), NHS Blood and Transplant (NHSBT), Trauma Audit and Research Network - Major Trauma Audit (TARN), National Emergency Laparotomy Audit (NELA), Neonatal Research Database (NNRD), Public Health Wales (PHW), UK Renal Registry (UKRR), Department of Health (DOH), Falls and Fragility Fractures Audit programme (FFFAP), Honest Broker Service, Northern Ireland Statistics and Research Agency (HBS), National Institute for Cardiovascular Outcomes Research (NICOR), Northern Ireland Cancer Registry (NICR), Out-of-Hospital Cardiac Arrest Outcomes (OHCAO) Registry, UK Cystic Fibrosis Registry (UKCFR)