‘Join Us’: the vanguard phase of a disease-agnostic Australian research register

Objectives Recruitment to medical research projects is challenging. We evaluated the feasibility of supporting recruitment of human participants to Australian research studies using a national disease-agnostic research register. Methods We undertook a quantitative longitudinal evaluation of participant enrolment and researcher utilisation of ‘Join Us’, a disease-agnostic research register, from its inception on 12 August 2020 to 28 July 2025. Participants were Australian adults (aged ≥18 years) and Australian research studies recruiting human participants. The main outcome measures included the numbers and demographics of community participants in ‘Join Us’, and the numbers and characteristics of the research studies supported. Results ‘Join Us’ was established in 2020 with input from >50 organisations spanning consumer, academic, health service and disease interest groups, and including every state and territory. As of 28 July 2025, there were 10,276 participants enrolled, with a mean age of 51 years (range 18–95 years), 71% women, 21% reporting a non-English language spoken in the home and 3% identifying as Aboriginal or Torres Strait Islander. The health issues most frequently reported by participants were mental health problems (40%) and cardiovascular disease (36%), with 11% of participants reporting no health problems. The register has issued >67,000 invitations to participate in 143 research studies conducted by researchers based in six states and territories. Conclusions The ‘Join Us’ vanguard phase has demonstrated the feasibility of implementing a disease-agnostic digital research register and its potential for supporting recruitment to diverse studies nationwide. Scaling the register has significant potential to satisfy both community calls for better opportunities to participate in research and researcher needs for enhanced recruitment.

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Publication Details

Journal
Public Health Research & Practice
Published
2026-09-10
DOI
https://doi.org/10.1071/pu25093
Primary Topic
Ethics in Clinical Research
Type
article
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article

‘Join Us’: the vanguard phase of a disease-agnostic Australian research register

Anthony Brown, Helen Monaghan, Bruce Neal, Lauren Houston et al.
Public Health Research & Practice
Ethics in Clinical Research
article

‘Join Us’: the vanguard phase of a disease-agnostic Australian research register

Anthony Brown, Helen Monaghan, Bruce Neal, Lauren Houston, Louisa Ruth Jorm, Clare Arnott, Greg Stewart, Rachel Neale, Jessica Smith
article en

Abstract

Objectives Recruitment to medical research projects is challenging. We evaluated the feasibility of supporting recruitment of human participants to Australian research studies using a national disease-agnostic research register. Methods We undertook a quantitative longitudinal evaluation of participant enrolment and researcher utilisation of ‘Join Us’, a disease-agnostic research register, from its inception on 12 August 2020 to 28 July 2025. Participants were Australian adults (aged ≥18 years) and Australian research studies recruiting human participants. The main outcome measures included the numbers and demographics of community participants in ‘Join Us’, and the numbers and characteristics of the research studies supported. Results ‘Join Us’ was established in 2020 with input from >50 organisations spanning consumer, academic, health service and disease interest groups, and including every state and territory. As of 28 July 2025, there were 10,276 participants enrolled, with a mean age of 51 years (range 18–95 years), 71% women, 21% reporting a non-English language spoken in the home and 3% identifying as Aboriginal or Torres Strait Islander. The health issues most frequently reported by participants were mental health problems (40%) and cardiovascular disease (36%), with 11% of participants reporting no health problems. The register has issued >67,000 invitations to participate in 143 research studies conducted by researchers based in six states and territories. Conclusions The ‘Join Us’ vanguard phase has demonstrated the feasibility of implementing a disease-agnostic digital research register and its potential for supporting recruitment to diverse studies nationwide. Scaling the register has significant potential to satisfy both community calls for better opportunities to participate in research and researcher needs for enhanced recruitment.

Public Health Research & PracticeVol. 36(3)
Consumers Union (US), The George Institute for Global Health (GB), QIMR Berghofer Medical Research Institute (AU), Royal Prince Alfred Hospital (AU), St Vincent Hospital (US), St. Vincent Hospital (US), NIHR Imperial Biomedical Research Centre (GB), Faculty of Public Health (GB), St Vincent's Clinic (AU), Department of Health (IE), George Institute for Global Health (IN), Health Data Research UK (GB), St. Vincent Hospital (US), Doctors Medical Center (US), George Institute for Global Health (CN), German Solar Association (DE), Oldham Council (GB), Ehime University (JP), Imperial College London (GB)
Openalex Percentile: Top 8%
Ethics in Clinical Research
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