[What do patients want in clinical trials? : Perspectives from ophthalmology and patient advocacy groups].

BACKGROUND

Participation in clinical trials often involves uncertainty despite high patient interest.

OBJECTIVE

To summarize patient perspectives and derive recommendations for patient-centered clinical trial design in ophthalmology.

MATERIAL AND

METHODS

Structured review integrating the literature and experiences from patient organizations and clinical trial centers.

RESULTS

Understandable clarification, realistic communication of expectancy, accessible information and study centers, continuity of care and contact persons, transparent cost regulation and reduction of logistical burdens are crucial for participation and retention in studies. Patient self-help organizations and ophthalmologists play a key role in information dissemination. After trial completion, participants expect feedback on group allocation, study results and further treatment options.

CONCLUSION

Early patient involvement and patient-oriented study design improve feasibility, recruitment, retention and ethical quality of clinical research. A timely incorporation of self-help, comprehensible communication and practical study trajectories are decisive.