Patient and Family Attitudes about an Eye Donation Registry for Research

Purpose: There is a shortage of human eye tissue available for scientists, and it is unknown how willing ophthalmic patients are to donate their eyes for research. Therefore, we assessed eye patient and family member attitudes regarding the establishment of an eye donation registry for research purposes. Materials and Methods: Surveys were distributed to consecutive patients attending the clinics of an academic ophthalmology practice over a period of 8 days. This survey consisted of questions about demographic information of the participant, attitudes regarding eye donation and attitudes regarding a registry for research-specific eye donation. An additional nested survey was administered to family members who accompanied survey participants. Results: A total of 207 patients and 76 accompanying family members returned their respective surveys. Of the patients, 55% indicated that they would consider joining a proposed eye donation registry for research, 30% were undecided and 15% would not consider joining (n = 193). Over 95% of family members indicated that they would support their relative's decision to enroll in the registry (n = 74). Of the potential donors, 41% indicated they would most prefer to learn about the registry from their eye doctor and 37% from a pamphlet (n = 180). Conclusions: A majority of patients with eye disease and their family members support the idea of establishing an advance-directive eye donation registry for research. This registry for research donors could be incorporated into the current eye donation registry. Such an addendum would bridge the current disconnect between ophthalmic patients who want to donate their eyes for research on their disease (and are ineligible to donate for corneal transplantation) and scientists who need more human eye tissue for experimentation.