The Willingness of Patients to Participate in an Eye Donation Registry for Research

• Published in: Ophthalmologica (Basel) Vol. 244; no. 3; pp. 179 - 186
• Main Authors: Huss, Muriel B., Schmitz-Valckenberg, Steffen, Finger, Robert P., Löffler, Karin U., Fleckenstein, Monika, Holz, Frank G., Pfau, Maximilian
• Format: Journal Article
• Language: English
• Published: Basel, Switzerland 01.07.2021
• Subjects: Research Article; Histopathology; Postmortem analysis; Clinicopathological studies; Patient attitude
• ISSN: 0030-3755; 1423-0267
• DOI: 10.1159/000513722

Introduction: For ophthalmologic research, the systematic correlation of clinical data with data obtained from postmortem tissue donation is of great benefit. In this respect, the establishment of an eye donation registry represents a prerequisite for the acquisition of such data. Methods: A total of 300 patients were interviewed at a tertiary referral center in Germany by means of a standardized questionnaire. Binary questions were evaluated by percentage; Likert-scaled questions (1 = does apply; 5 = does not apply) were analyzed by the median and 25th (Q 25 ) and 75th (Q 75 ) percentiles. Results: The majority of patients (77.0%) would agree to donate their eyes for research purposes. When asked about reasons against an eye donation, 60.9% of all patients only stated reasons in the category “addressable” (e.g., not enough awareness of the topic). The vast majority of patients considered it appropriate for an ophthalmologist to approach them on the issue of postmortem eye donation (median 1, Q 25 1, Q 75 1). Conclusion: Overall, patients had a positive attitude towards postmortem eye donation for research purposes. Importantly, reasons given against postmortem eye donation were often related to misconceptions and were potentially addressable. These results underline the fundamental willingness of ophthalmological patients in Germany to donate their eyes postmortem for research purposes.