VISION RESEARCH A NATIONAL PLAN: 19992003 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES PUBLIC HEALTH SERVICE NATIONAL INSTITUTES OF HEALTH NATIONAL EYE INSTITUTE A Report of the National Advisory Eye Council DEDICATION Not long after the Roys great intellect, careful experimental approach, creation of the National Eye and keen scientific insights earned him the MERIT Institute (NEI) by Congress Award from the NEI and the Friedenwald Award from in 1968, a young, promising the Association for Research in Vision and vision research scientist Ophthalmology. While maintaining an active and named Roy Steinberg vigorous vision research program, Roy also found time received one of the first to serve as an adviser to the National Institutes of Roy H. Steinberg, M.D., Ph.D. NEI Research Career Health and the NEI. He was a member and later Chair Development Awards. This of the Visual Disorders Study Section, the forerunner marked the beginning of of todays Visual Sciences C. He served as Chair of a long and productive association between the NEI the Retinal Diseases Panel for the NEIs Vision and a researcher who served the vision community ResearchA National Plan: 1987 Evaluation and in many ways. Update and as a consultant to the 19781982 and the 19941998 national plans. He authored the highlights With his great breadth of knowledge and sharp mind, and recommendations from two NEI-sponsored Roy had a clearer grasp than most of the many facets workshopsthe first on the Cell Biology of Retinal of retinal research, both clinical and laboratory. Most Detachment in 1986, and the second on Repair and productive scientists establish a single theme to their Replacement to Restore Sight in 1991. In 1994, he research program during their career. Roy was appointed to the National Advisory Eye Council, was different, adapting to new ideas and seeking where he served with great distinction until his death. challenging new avenues through which to pursue his numerous research interests. His early work led to The NEI and the vision community have lost a dear a greater understanding of the complex active friend. We are deeply indebted to Roy for his unselfish and passive ionic mechanisms governing retinal service and loyalty. The NEI is proud to dedicate pigment epithelium (RPE) cell transport properties. Vision ResearchA National Plan: 19992003 in his He showed how the RPE contributes to the memory. electroretinogram and controls the environment surrounding the photoreceptor cells. Carl Kupfer, M.D. Director In the late 1980s, while maintaining an National Eye Institute interest in retinal physiology, Roy and his colleagues at the University of California at San Francisco became interested in growth factors and their potential use in slowing or preventing retinal degenerations. Roy was instrumental in demonstrating that basic fibroblastic growth factors could act as a survival-promoting neurotrophic factor in hereditary retinal degenerations. At the time of his death, Roy was involved in experiments he believed could lead to treatment of blinding diseases like retinitis pigmentosa and macular degeneration. NATIONAL ADVISORY EYE COUNCIL 1997-1998 Anthony J. Adams, O.D., Ph.D.* Millicent L. Knight, O.D. Professor of Optometry and North Shore Eye Center Vision Science Evanston, IL School of Optometry University of California at Berkeley Ken Nakayama, Ph.D. Berkeley, CA Professor Department of Psychology David C. Beebe, Ph.D.** Harvard University Professor Cambridge, MA Department of Ophthalmology and Visual Science Anthony B. Nesburn, M.D. Washington University Director School of Medicine Ophthalmology Research Laboratories St. Louis, MO Cedars-Sinai Medical Center Los Angeles, CA Ms. Sue Dauphin President David S. Zee, M.D. National Sjögrens Professor Syndrome Association Department of Neurology Jupiter, FL Johns Hopkins Hospital Baltimore, MD Marian R. Fisher, Ph.D. Senior Scientist Department of Biostatistics EX OFFICIO MEMBERS University of Wisconsin Madison, WI VETERANS AFFAIRS REPRESENTATIVE Mr. Richard T. Hellner* Diane L. Hatchell, Ph.D. President and CEO Research Career Scientist Prevent Blindness America Veterans Administration Medical Center Schaumburg, IL and Duke University Eye Center Eve J. Higginbotham, M.D.** Durham, NC Professor Department of Ophthalmology DEPARTMENT OF DEFENSE University of Maryland REPRESENTATIVES School of Medicine Lt. Col. William J. Flynn, USAF, MC Baltimore, MD Department of Ophthalmology Wilford Hall Medical Center David H. Hubel, M.D. Lackland Air Force Base, TX Professor Department of Neurobiology Capt. David O. Mazur, MC, USN Harvard Medical School Department of Ophthalmology Boston, MA National Naval Medical Center Bethesda, MD ____________ *Member, Vision Research Program Planning Subcommittee EXECUTIVE SECRETARY Jack A. McLaughlin, Ph.D. **Cochair, Vision Research Program Deputy Director Planning Subcommittee National Eye Institute, NIH Bethesda, MD TABLE OF CONTENTS DEDICATION NATIONAL ADVISORY EYE COUNCIL 19971998 FOREWORD i EXECUTIVE SUMMARY v VISION STATEMENT AND MISSION v DEVELOPMENT OF THE 19992003 PLAN v RETINAL DISEASES PROGRAM vi CORNEAL DISEASES PROGRAM viii LENS AND CATARACT PROGRAM x GLAUCOMA PROGRAM xii STRABISMUS, AMBLYOPIA, AND VISUAL PROCESSING PROGRAM xiii VISUAL IMPAIRMENT AND ITS REHABILITATION xvii HEALTH SERVICES RESEARCH xix CROSS-CUTTING AND POLICY ISSUES xx Introduction 1 Vision for the Future 5 Mission and Challenges for Vision Research 7 MISSION 7 CHALLENGES FOR VISION RESEARCH 7 Panel Reports REPORT OF THE RETINAL DISEASES PANEL 13 Program Overview and Goals 13 VISION RESEARCHA NATIONAL PLAN: 1999-2003 Assessment of Progress 15 Program Objectives 24 Retinal Diseases Panel Roster 37 REPORT OF THE CORNEAL DISEASES PANEL 41 Program Overview and Goals 41 Assessment of Progress 43 Program Objectives 51 Corneal Diseases Panel Roster 56 REPORT OF THE LENS AND CATARACT PANEL 59 Program Overview and Goals 59 Assessment of Progress 60 Program Objectives 62 Lens and Cataract Panel Roster 75 REPORT OF THE GLAUCOMA PANEL 77 Program Overview and Goals 77 Assessment of Progress 78 Program Objectives 81 Glaucoma Panel Roster 93 REPORT OF THE STRABISMUS, AMBLYOPIA, AND VISUAL PROCESSING PANEL 95 Program Overview and Goals 95 Assessment of Progress 96 Program Objectives 100 Strabismus, Amblyopia, and Visual Processing Panel Roster 114 REPORT OF THE VISUAL IMPAIRMENT AND ITS REHABILITATION PANEL 117 Program Overview and Goals 117 Assessment of Progress 120 TABLE OF CONTENTS Program Objectives 122 Visual Impairment and Its Rehabilitation Panel Roster 130 REPORT OF THE HEALTH SERVICES RESEARCH WORKING GROUP 133 Program Overview and Goals 133 Assessment of Progress 133 Program Objectives 134 Health Services Research Working Group Roster 139 CROSS-CUTTING AND POLICY ISSUES 141 Cross-Cutting Issues 141 Policy Issues 143 Consultants, Reviewers, and Other Contributors 156 The GPRA and NEI Planning Process 165 GLOSSARY OF VISION TERMS 169 Illustration of the eye: Courtesy of Charles M. Blow/The New York Times Illustration of the brain: Courtesy of National Geographic FOREWORD ver the past few years, there has been For more than 20 years, the National Eye Institute increasing interest in priority setting and (NEI) and the National Advisory Eye Council (NAEC), Ostrategic planning processes throughout the through NAECs Vision Research Program Planning Federal sector. Among the overarching purposes of Subcommittee, have attempted to conscientiously the Government Performance and Results Act (GPRA), meet their stewardship responsibilities through a which was passed by Congress and subsequently comprehensive planning process. During the planning signed into law in 1993, were provisions to make process for their first plan, published in 1975, the NEI Federal agencies accountable for achieving program and the NAEC stated the need for involving the results through the establishment of program goals and research community in establishing recommendations objectives against which progress could be measured. for the conduct and evaluation of vision research: Within the scientific community, concerns have Such recommendations, when formulated often been voiced that the science cannot be planned, with the assistance of respected members of because the course of science is often influenced by the research community, can be helpful to the unexpected findings. Yet it could be argued that the investigator in planning the future course of conduct of science is one of the most care- his or her research and to the Federal fully planned of all activities funded by the Federal administrator anxious to assure continuity of Government. Indeed, the instructions for submitting high-quality research support in an uncertain a research grant application require each applicant to period of fluctuating research budgets. specify: what will be done, why it is important, what has already been done, and how it will be done. These The NEI and the NAEC have long considered the points must be covered in the applications sections planning and evaluation activities of the program as on the specific aims, background and significance, essential components of the strategic planning preliminary studies and progress report, and research process. Panels of experts are assembled to review design and methods. Evaluation of the applicant and and make recommendations on NEI research the proposed research through the peer review programs. They are also asked to determine where process are also key elements of research funding. progress was made by identifying