Access important health data about chronic conditions
Chronic Conditions Umbrella Program Linkage
The Chronic Conditions Umbrella Program Linkage (CUPL) connects researchers with big data quickly and efficiently. CUPL allows access to 45 and Up Study survey data plus 10 datasets with just one approval process.
What is CUPL?
CUPL is an enduring linked dataset which allows researchers to connect data from the Sax Institute’s 45 and Up Study – one of the largest longitudinal surveys in the world – with a wealth of information from 10 administrative health datasets.
CUPL speeds up access to data, reducing wait times for researchers by as much as 80%. A researcher who may have previously waited more than a year to access linked data could gain access through CUPL in as little as two to three months.
The streamlined process makes it easier to get started on the actual research if you require multiple data sources for your research into a wide range of chronic conditions.
Administrative data linked with the 45 and Up Study surveys can help identify incidence and outcomes of chronic conditions and multimorbidity. CUPL will further support researchers’ work into the causes of chronic conditions; better ways to prevent them or treat them once diagnosed; and the interactions between infectious diseases and chronic conditions. CUPL aims to improve the quality, quantity and efficiency of chronic conditions research in Australia.
Data provided to researchers through CUPL is made available via the Sax Institute’s Secure Unified Research Environment (SURE),ensuring strict security and confidentiality are maintained at all times.
CUPL is managed by the Sax Institute and approved by the Population and Health Services Research Ethics Committee (PHSREC) and relevant Commonwealth and state data custodians.
How CUPL can help you
- Access data from multiple 45 and Up Study surveys plus 10 datasets with just one approval process, cutting set-up times by as much as 80%
- Avoid the administrative burden of liaising with multiple data custodians and linkage agencies
- Access current and relevant data to identify your cohort of interest and track their outcomes
- Gain a unique insight into the impact of lifestyle, family history and other social determinants on chronic conditions and how these change over time.
FAQ
The datasets available through CUPL are:
- 45 and Up Study data
- Medicare Benefits Scheme (MBS data) including the Department of Veteran Affairs (DVA) Medicare Benefits Scheme
- Pharmaceutical Benefits Scheme (PBS data) including the Repatriation Pharmaceutical Benefits Scheme (RPBS data)
- NSW Admitted Patient Data Collection (APDC)
- NSW Registry of Births, Deaths and Marriages (RBDM-Death)
- NSW Cause of Death Unit Record File (COD-URF)
- NSW Emergency Department Data Collection (EDDC)
- NSW Cancer Registry (NSW CCR)
- NSW Mental Health Data Collection (CHAMB)
- Notifiable Conditions Information Management System (NCIMS)
- Notifiable Conditions Information Management System – COVID
More details about each dataset, including number of participants and records, can be found here. New datasets will be added to CUPL over time.
Links to the Data Dictionaries for each dataset can be found here. Data Dictionaries are updated regularly by the data custodians and list all available variables and other information such as variable definitions and timeframes covered by each dataset for collection.
The Sax Institute will update all datasets annually or more often if requested (subject to availability). The currency of the data depends on the dataset and is specified in the Data Dictionaries for each dataset.
Research conducted under CUPL will focus on chronic conditions and could include: multi-morbidity; chronic on acute disease exacerbations; and impact of chronic conditions generally on people’s health, wellbeing and quality of life.
Chronic conditions cover a broad range of long-lasting conditions with persistent effects including:
- Cardiovascular diseases, cancers, chronic respiratory conditions, chronic musculoskeletal conditions, metabolic diseases and mental health conditions
- Infectious diseases that persist in the long term such as chronic hepatitis B, and more recently, long COVID-19
- Congenital disorders (including genetic or chromosomal disorders)
- Other conditions, and disorders or disability stemming from injury such as limb amputation or traumatic brain injury.
Research conducted using CUPL should:
- Seek to generate findings which will improve disease diagnosis, treatment and management
- Generate knowledge which can be used to direct and inform policy and programs in health
- Contribute to the development of a critical mass in research capability and knowledge in the area of research focus.
Any research proposal focusing on chronic conditions will be assessed for suitability to use CUPL.
CUPL will be piloted in 2023 and made available more generally across the research community from early 2024.
Bona fide researchers will be able to access CUPL provided the research project meets the requirements for project feasibility, scientific review and ethics approval. Researchers must be employed by, or affiliated with, an institution such as a university in order to fulfil the legal and ethical requirements for access to CUPL.
Researchers who are currently using 45 and Up Study data must finish their contracts before applying for CUPL. Projects requiring non-CUPL data are ineligible.
All researchers are welcome to make enquiries to the 45 and Up Study team. Please complete an EOI Form and the 45 and Up Study team will provide feedback on your project’s feasibility and data options.
No. Use of CUPL is optional for all researchers seeking to use the 45 and Up Study cohort for their research. Some research may not require the big data available in CUPL, and researchers with limited experience in using linked data may find the work needed to select and clean the variables is challenging and disproportionate to their research needs. Researchers may choose to establish their own data linkage project or use the 45 and Up Study survey data alone rather than the full CUPL linkage. The Sax Institute will continue to support all 45 and Up Study research. CUPL has been developed to provide a streamlined option for accessing multiple data sources when researching chronic conditions.
The 45 and Up Study Research team are happy to answer queries about the kinds of research that may benefit from using CUPL compared with other data access models. The team can be contacted at 45andUp.research@saxinstitute.org.au
Applying for CUPL
Learn more about our three-step application process to use CUPL