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Table 2 Motivating factors for patient participation in registries

From: Perspectives on neurological patient registries: a literature review and focus group study

1. Altruistic attitudes – the perception of benefit to the greater good even beyond immediate individual benefit or the potential for individual benefit [10, 16]
2. That data will be used by responsible people for legitimate purposes – participants desire clear purposes for collecting data and clear methods for its release [10]
3. Advancement in research and the possibility of elucidation of treatment or cure, [11] and subsequently improved quality of life [16]
4. Desire for prompt information after diagnosis [7]
5. Perception of equal communication with health practitioners and researchers [7]
6. Other factors influencing participation include satisfaction with care, [13] age, education, gender and recruiting site [12, 22]