Table 2 Motivating factors for patient participation in registries

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]