Esme’s Umbrella is committed to research into Charles Bonnet Syndrome
We want to bridge the gap between cutting-edge research and those living with CBS, offering a glimpse into ongoing studies, breakthroughs, and potential future treatments.
CBS Research 2015-2023
Funding sourced or co-funded by Esme’s Umbrella (Charity #1197087)
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The world’s first Charles Bonnet Syndrome research was led by Professor Dominic ffytche at King’s College London. This produced the SHAPED report
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An overview of psychological and social factors in CBS
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Study in how Stress and Isolation exacerbate Charles Bonnet Syndrome
Esme's Umbrella Researchers
Understanding Charles Bonnet Syndrome in Children: A Study by Lee Jones, Lara Ditzel-Finn, Leanne McDonald, and Mariya Moosajee
We are pleased to share the paper authored by Lee Jones, Lara Ditzel-Finn, Leanne McDonald, and Mariya Moosajee, which explores the phenomenology of Charles Bonnet Syndrome (CBS) in children. CBS, characterised by the presence of visual hallucinations secondary to visual impairment, is often under-recognised in younger populations. This study aims to deepen our understanding of CBS in children, specifically focusing on the nature of these hallucinations and the emotional impact on both the children and their families.
The research highlights the support needs of those affected by CBS, offering valuable insights into the unique challenges faced by families navigating this condition. The study design was based on semistructured qualitative interviews, providing a detailed and empathetic perspective on the lived experiences of patients and their families.
The button below will allow you to download the paper, which offers essential information for healthcare professionals, researchers, and anyone interested in learning more about CBS in children.
Download here
Invitation to Participate in Research on Visual Imagination and Sight Impairment
Cardiff University is conducting a research study to explore visual imagination in individuals with sight impairment. The study focuses on understanding why some people experience visual hallucinations—often associated with Charles Bonnet Syndrome—after sight loss.
Study Overview
The primary aim of this study is to enhance the understanding of visual hallucinations and the variations in visual imagination among people with sight impairment. By gathering insights from participants, the research team seeks to clarify why visual hallucinations occur after sight loss and to investigate the factors that influence the vividness of imagined visual scenes.
Participant Criteria
Individuals who meet the following criteria are invited to participate:
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Certification: Must be officially recognized as Sight Impaired or Severely Sight Impaired in the UK.
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Age Requirement: Must be 18 years of age or older.
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Experience with Visual Hallucinations: Participants may have experienced visual hallucinations following sight loss, or they may not have experienced them.
Study Details
The study is conducted entirely online and is designed to take approximately 60 minutes to complete. Participants will be asked questions about:
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Nature of Sight Impairment: Details regarding the type and extent of the sight impairment.
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Experience of Visual Hallucinations: Information about any visual hallucinations experienced after sight loss (if applicable).
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Visual Imagination: The ability to imagine visual scenes vividly.
All responses are completely anonymous, ensuring that participant confidentiality is maintained while contributing valuable data to this research effort.
How to Participate
Individuals interested in taking part in this study or in obtaining further information are encouraged to visit the link below:
Click here for more information and to participate in the study
Participation in this research is crucial for advancing knowledge and support for individuals experiencing visual hallucinations following sight loss. Cardiff University appreciates the contributions of everyone taking part in this important study.
Study Assessing Blood Samples in Charles Bonnet Syndrome (CBS)
Overview of the Study
Researchers at University College London and Moorfields Eye Hospital are conducting a study to explore potential biological markers linked with Charles Bonnet Syndrome (CBS). Led by Professor Mariya Moosajee and Dr Lee Jones, the study aims to identify unique patterns or markers in the blood that may be associated with CBS. Individuals who experience CBS are invited to visit Moorfields Eye Hospital in London, where they will provide a small blood sample and complete a questionnaire. The findings from this research could contribute to a better understanding of the biological mechanisms underlying CBS, potentially leading to improved diagnostic and management strategies for those affected by the condition.
Participation Details
Participation involves a single visit to Moorfields Eye Hospital in London. During this visit, participants will:
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Provide a small blood sample.
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Complete a questionnaire.
The process is quick, safe, and conducted by trained medical professionals.
Who Can Take Part
The study is open to individuals who:
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Are aged 18 or older.
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Regularly experience Charles Bonnet Syndrome (at least one hallucination per week).
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Are comfortable with a short hospital visit and having a small blood sample taken.
How to Get Involved
If interested in participating or if more information is required, please contact Dr Lee Jones at: lee.jones10@nhs.net. Contributions to this study could make a significant difference in understanding and improving care for those with CBS.