The International Vitreoretinal B-Cell Lymphoma Registry: a protocol paper
Introduction Vitreoretinal lymphoma is a rare ocular cancer with high morbidity and mortality despite treatment. Diagnosis by cytopathology is often delayed, and various molecular and image-based investigations have been developed. Diverse treatments are used, but there is a limited medical evidence...
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BMJ Publishing Group
2022-07-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/7/e060701.full |
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| author | David J Wilson Valérie Touitou Justine R Smith Manabu Mochizuki Hiroshi Takase Steven Yeh Alexandra L Farrall H Nida Sen Daniel V Vasconcelos-Santos Joke H de Boer Ninette H ten Dam-van Loon Janet L Davis Anthony J Hall Mark H B Radford |
| author_facet | David J Wilson Valérie Touitou Justine R Smith Manabu Mochizuki Hiroshi Takase Steven Yeh Alexandra L Farrall H Nida Sen Daniel V Vasconcelos-Santos Joke H de Boer Ninette H ten Dam-van Loon Janet L Davis Anthony J Hall Mark H B Radford |
| author_sort | David J Wilson |
| collection | DOAJ |
| description | Introduction Vitreoretinal lymphoma is a rare ocular cancer with high morbidity and mortality despite treatment. Diagnosis by cytopathology is often delayed, and various molecular and image-based investigations have been developed. Diverse treatments are used, but there is a limited medical evidence to differentiate their effectiveness. We designed an international registry that would collect diagnostic, treatment and outcomes data, to establish new evidence for the management of this cancer.Methods and analysis The International Vitreoretinal B-Cell Lymphoma Registry will accrue data retrospectively for individuals aged 18 years or older, diagnosed with new or recurrent vitreoretinal B-cell lymphoma on or after 1 January 2020. A steering committee of subspecialised ophthalmologists identified 20 key clinical data items that describe patient demographics, tissue involvements, diagnostic testing, ocular and systemic treatments and treatment complications, and visual acuity and survival outcomes. Customised software was designed to permit collection of these data across a single baseline and multiple follow-up forms. The platform collects data without identifiers and at 3 month reporting intervals. Outcomes of the project will include: (1) descriptions of clinical presentations, and diagnostic and therapeutic preferences; (2) associations between clinical presentations, and diagnostics and treatments, and between diagnostics and treatments (assessed by ORs with 95% CIs); and (3) estimations of rates of vision loss, and progression-free and overall survival (assessed by Kaplan-Meier estimates).Ethics and dissemination The registry has received Australia-wide approval by a national human research ethics committee. Sites located outside Australia are required to seek local human research ethics review. Results generated through the registry will be disseminated primarily by peer-reviewed publications that are expected to inform clinical practice, as well as educational materials. |
| format | Article |
| id | doaj-art-ab57deac2003455d8a5ef6f63e8d062b |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2022-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-ab57deac2003455d8a5ef6f63e8d062b2025-01-31T21:20:08ZengBMJ Publishing GroupBMJ Open2044-60552022-07-0112710.1136/bmjopen-2021-060701The International Vitreoretinal B-Cell Lymphoma Registry: a protocol paperDavid J Wilson0Valérie Touitou1Justine R Smith2Manabu Mochizuki3Hiroshi Takase4Steven Yeh5Alexandra L Farrall6H Nida Sen7Daniel V Vasconcelos-Santos8Joke H de Boer9Ninette H ten Dam-van Loon10Janet L Davis11Anthony J Hall12Mark H B Radford13Department of Ophthalmology, Casey Eye Institute, Oregon Health and Science University, Portland, Oregon, USADepartment of Ophthalmology, Sorbonne University, Hospital Pitié Salpêtrière, Paris, FranceCollege of Medicine and Public Health, Flinders University, Adelaide, South Australia, AustraliaDepartment of Ophthalmology and Visual Science, Tokyo Medical and Dental University, Tokyo, JapanDepartment of Ophthalmology and Visual Science, Tokyo Medical and Dental University, Tokyo, JapanDepartment of Ophthalmology and Visual Sciences, Truhlsen Eye Institute, University of Nebraska Medical Center, Omaha, Nebraska, USACollege of Medicine and Public Health, Flinders University, Adelaide, South Australia, AustraliaNational Eye Institute, National Institutes of Health, Bethesda, Maryland, USADepartment of Ophthalmology, Universidade Federal de Minas Gerais, Belo Horizonte, BrazilDepartment of Ophthalmology, University Hospital Utrecht, Utrecht, The NetherlandsDepartment of Ophthalmology, University Hospital Utrecht, Utrecht, The NetherlandsBascom Palmer Eye Institute, University of Miami, Miami, Florida, USADepartment of Ophthalmology, Alfred Health, Melbourne, Victoria, AustraliaQueensland Eye Institute, Brisbane, Queensland, AustraliaIntroduction Vitreoretinal lymphoma is a rare ocular cancer with high morbidity and mortality despite treatment. Diagnosis by cytopathology is often delayed, and various molecular and image-based investigations have been developed. Diverse treatments are used, but there is a limited medical evidence to differentiate their effectiveness. We designed an international registry that would collect diagnostic, treatment and outcomes data, to establish new evidence for the management of this cancer.Methods and analysis The International Vitreoretinal B-Cell Lymphoma Registry will accrue data retrospectively for individuals aged 18 years or older, diagnosed with new or recurrent vitreoretinal B-cell lymphoma on or after 1 January 2020. A steering committee of subspecialised ophthalmologists identified 20 key clinical data items that describe patient demographics, tissue involvements, diagnostic testing, ocular and systemic treatments and treatment complications, and visual acuity and survival outcomes. Customised software was designed to permit collection of these data across a single baseline and multiple follow-up forms. The platform collects data without identifiers and at 3 month reporting intervals. Outcomes of the project will include: (1) descriptions of clinical presentations, and diagnostic and therapeutic preferences; (2) associations between clinical presentations, and diagnostics and treatments, and between diagnostics and treatments (assessed by ORs with 95% CIs); and (3) estimations of rates of vision loss, and progression-free and overall survival (assessed by Kaplan-Meier estimates).Ethics and dissemination The registry has received Australia-wide approval by a national human research ethics committee. Sites located outside Australia are required to seek local human research ethics review. Results generated through the registry will be disseminated primarily by peer-reviewed publications that are expected to inform clinical practice, as well as educational materials.https://bmjopen.bmj.com/content/12/7/e060701.full |
| spellingShingle | David J Wilson Valérie Touitou Justine R Smith Manabu Mochizuki Hiroshi Takase Steven Yeh Alexandra L Farrall H Nida Sen Daniel V Vasconcelos-Santos Joke H de Boer Ninette H ten Dam-van Loon Janet L Davis Anthony J Hall Mark H B Radford The International Vitreoretinal B-Cell Lymphoma Registry: a protocol paper BMJ Open |
| title | The International Vitreoretinal B-Cell Lymphoma Registry: a protocol paper |
| title_full | The International Vitreoretinal B-Cell Lymphoma Registry: a protocol paper |
| title_fullStr | The International Vitreoretinal B-Cell Lymphoma Registry: a protocol paper |
| title_full_unstemmed | The International Vitreoretinal B-Cell Lymphoma Registry: a protocol paper |
| title_short | The International Vitreoretinal B-Cell Lymphoma Registry: a protocol paper |
| title_sort | international vitreoretinal b cell lymphoma registry a protocol paper |
| url | https://bmjopen.bmj.com/content/12/7/e060701.full |
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