Abstract
Purpose:
To assess experiences of vision scientists concerning the availability, quality, and documentation of human eye tissue for research, and to elicit researcher feedback about the establishment of an online portal that pairs eye bank capabilities with researcher needs.
Methods:
An online survey was designed by a working group of vision scientists and eye bank personnel and sent to members of ARVO.
Results:
A total of 407 responses were received from across ARVO scientific sections and career stages. Most respondents report typically obtaining human eye tissue from their local eye bank (57%). Almost half (43%) find it “difficult” or “very difficult” to get an adequate quantity of human eye tissue for their research, and 88% report that they would use more human eye tissue if it were more accessible. Regarding tissue quality, 43% of respondents regularly limit the scope of their work due to difficulty obtaining tissue that meets their needs, and almost half (43%) indicate that they question their findings due to tissue quality at least sometimes. Respondents uniformly desire more documentation about ocular tissue than they typically receive. Most (62%) would “definitely” or “very likely” use a proposed online resource to facilitate connections between eye banks and researchers.
Conclusions:
Vision scientists report difficulty in obtaining human eye tissue with the quality and clinical documentation required for their research. An online portal may better help pair researcher needs and eye bank capabilities.
The availability of quality human eye tissue is indispensable for advancing research on blinding diseases. Although animal models and ocular tissues are a useful resource, the most prevalent human eye diseases, such as primary open-angle glaucoma and AMD, uniquely occur in humans and are difficult to model in animals because of anatomical differences, genetics, and other contributors to these complex diseases. Thus, human eye tissues and samples are needed to help understand the relationship among genetic disposition, environmental influences, and aging on the etiology of complex eye disease. In particular, human eye tissue that is of high quality (i.e., short death-to-preservation intervals) and has relevant clinical documentation allows targeted experimentation to dissect out mechanisms that underlie pathology responsible for these complicated diseases.
Unfortunately, there has been a gradual decline in the availability of human eye tissues for research.
1 Statistics from the Eye Bank Association of America (EBAA) demonstrate a persistent downward trend in the proportion of donated tissue that is distributed from eye banks for research use (
Fig. 1).
2–4 Additionally, the tissue quality and clinical documentation that researchers receive often do not align with that desired for experimentation, as eye bank procurement processes are primarily centered on the acquisition of donor tissue for clinical transplantation. Specifically, procurement protocols are not always well suited to serve researchers' needs for quantity, freshness, donor characteristics, and preparation methods of ocular tissue. Due to these concerns, scientists have called for ways to improve the accessibility and quality of donor eyes for research, including innovative collaborations with eye banks.
5
Partnerships between vision scientists and eye banks are critical to foster the shared mission of both groups to advance research of blinding eye diseases.
6 Scientists have indicated that their local eye bank is their primary source of tissue, and close relationships between researchers and eye banks are required for fulfillment of particular tissue requests.
1 However, the local nature of researcher–eye bank relationships may not always pair the eye bank capabilities with specific researcher tissue needs.
In pursuit of their shared mission of advancing vision research, ARVO and EBAA convened focus groups to discuss eye bank capabilities and eye research needs and to determine how ARVO and EBAA can better connect their two communities. The following goals were identified at meetings of the ARVO and EBAA collaborative group over the past year: (1) to connect eye researchers and eye banks to improve access and availability of quality eye tissue; (2) to improve training and education on the preparation and use of tissue; and (3) to increase eye recoveries for research purposes.
To pursue the objective of connecting eye researchers and eye banks and to improve accessibility of quality eye tissue for research, ARVO and EBAA proposed an online portal as a service to researchers, linking researchers and eye banks directly. This resource would include an online listing of eye banks with associated capabilities and contacts. To assess the feasibility of the proposed research tissue portal, surveys were administered to ARVO and EBAA memberships, accessing their needs and challenges regarding donor eye tissue for research, and to inquire about utility of the proposed online portal.
Here we report results from the ARVO member survey regarding experiences with the accessibility and quality of human eye tissue for research, and to assess whether a proposed online eye tissue portal may be beneficial for researchers.
ARVO and the Eye Bank Association of America are working together to strengthen relationships between eye banks and eye researchers and to improve access to quality eye tissue. To that end, it will be helpful to learn more about researchers' needs and challenges.
You are receiving this survey because your ARVO member profile indicates you use human eye tissue in your work.
The survey should take approximately 5 minutes to complete. We appreciate your participation.
1. How important do you feel it is to do research on human eye tissue?
2. Where do you typically obtain human eye tissue for research?
__ National Disease Research Interchange (NDRI)
3. Are you using surgical discard from the operating room (OR)?
4. What is the typical cost of obtaining a whole globe for research? (USD)
5. How many human eyes do you use in your research during the following time periods?
6. Would you use more human eye tissue in your research if it were more readily available?
7. What information do you typically know about the human eye tissue available to you in your work? (Select all that apply.)
__ Death-to-preservation/enucleation time
__ Patient complaint/history of current illness
__ Patient past medical history
__ Patient family history
__ Pathological diagnosis
__ Patient treatment outcomes
__ Patient consent/authorization status
__ Quality control data on the tissue itself (e.g., use of standard operating procedures for collection, storage, and management)
8. If all barriers were removed, what information or characteristics about human eye tissue would you consider ideal to know in order for you to label the tissue “high quality”? (Select all that apply.)
__ Death-to-preservation/enucleation time
__ Patient complaint/history of current illness
__ Patient past medical history
__ Patient family history
__ Pathological diagnosis
__ Patient treatment outcomes
__ Patient consent/authorization status
__ Quality control data on the tissue itself (e.g., use of standard operating procedures for collection, storage, and management)
9. How easy or difficult is it for you to obtain an adequate quantity of human eye tissue?
10. How do you grade the quality of the tissue used?
__ I image and grade it myself
__ I grade it myself, but do not image the tissue
__ I have others grade it
__ I have others image and grade the tissue
__ I use history for diagnosis (i.e., patient had history of AMD)
11. What percentage of time is the human eye tissue you get of adequate quality for your project needs?
12. If you use fresh (non-fixed tissue) in what time frame do you need tissue prior to freezing?
__ <4 hours from time of death
__ 4–6 hours from time of death
__ 6–10 hours from time of death
__ 10–20 hours from time of death
13. What is the typical death-to-preservation/enucleation time for human eye tissue you receive?
14. What is the ideal window of death-to-preservation/enucleation time of human eye tissue for your research?
15. How often, if ever, have you questioned findings/outcomes from your work because you had concerns about the quality of the human eye tissue you had available to use?
16. How often, if ever, have you limited the scope of your work/objectives because of difficulty obtaining human eye tissue that met your needs?
17. What percentage of the human eye tissue you typically acquire for your work/objectives are you unable to use because of poor quality or other problems with the tissue itself?
Our team is exploring the possibility of developing an online resource to facilitate relationships between researchers and eye banks. Each party could post the types of tissues they either seek or can provide, along with distinguishing attributes (age, ethnicity, comorbidities, etc.). With this in mind, please answer the follow question.
18. If a resource like the one described in this survey was created, how likely do you think the information provided would improve your work?
19. Which of the following best describes the primary professional focus?
__ Educations/academic teaching
__ In-training basic research
__ In-training clinical research
__ In-training clinical practice
20. What type of organization are you currently working in?
__ Industry/Commercial/Corporate
__ Private/group practice
21. How would you classify your career stage?
__ Early career up to 10 years
__ Mid-career 10–25 years