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Analysis and validation of a Parkinson’s disease register as a recruitment tool for clinical studies

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Background

Many patients with Parkinson’s disease (PD) are not afforded the opportunity to participate in clinical studies. A register of research-interested patients could improve involvement. We have established a register of research-interested PD patients within the South West of England, with pragmatic inclusion criteria and multiple routes of recruitment.

Purpose

To determine whether a register of PD patients interested in research could be established in a resource-efficient manner, and whether in comparison with traditional recruitment methods, the register would provide a more representative patient cohort and facilitate rapid and inclusive recruitment to clinical studies.

Methods

We undertook a comprehensive analysis of the register three years after it was initiated, including documentation of the pitfalls and benefits of its establishment, investigation of its utility as a recruitment tool and a survey of recruiters.

Results

There were 529 active participants (M:F = 1.6:1) (589 recruits, 60 withdrawn): mean age 71.4 yrs; mean disease duration 8.8 yrs from symptom onset, 7.2 yrs from diagnosis. 30% of register participants were self-referred; 70% were recruited by a healthcare practitioner. Local factors such as the availability of research support staff influenced recruitment. Response rate to annual questionnaires was 86.5%. There was a self-reported PD diagnosis rate of 92% at baseline, 88% at month 12 and 83% at month 24. Total staff time required for pack preparation, recruitment and data entry was 15 minutes for each new recruit, and 5 minutes for each follow-up questionnaire. 85% of recruiters felt the register was a useful means of facilitating research and providing data for planning of service provision. In our feasibility study, a single mailing to participants resulted in a final recruitment rate that was double that achieved by traditional face-to-face recruitment.

Limitations

Despite 30% of participants self-referring to the register, all patients on the register were being seen in secondary care, either by a neurologist (40%) or a geriatrician with a specialist interest in movement disorders (60%). We have therefore yet to demonstrate access to a population that could not be accessed by traditional secondary-care based recruitment methods, and will be targeting register recruitment specifically in primary care to address this.

Conclusions

We have established a register of research-interested PD patients in a resource-efficient and pragmatic manner, which has the potential to maximise inclusivity and clinical research opportunities.

Acknowledgements

This work was supported by the Dementias and Neurodegenerative Diseases Network.

Author information

Correspondence to Camille B Carroll.

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This article is published under license to BioMed Central Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Carroll, C.B., Palmer, A., Cosby, C. et al. Analysis and validation of a Parkinson’s disease register as a recruitment tool for clinical studies. Trials 12, A118 (2011) doi:10.1186/1745-6215-12-S1-A118

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Keywords

  • Recruitment Method
  • Register Participant
  • Total Staff
  • Annual Questionnaire
  • Recruitment Tool

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