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The objective of this study is to examine the legitimacy of gene therapy use in the treatment of exudative age-related macular degeneration (AMD). This involves questioning its beneficence/non-maleficence ratio given the limited experience with this innovative technology and its irreversible effects, requiring a surgical procedure for administration. Additionally, the study explores patient autonomy in decision-making concerning complex therapeutic approaches and how patients should be supported to best uphold this autonomy.
Qualitative research based on semi-structured interviews conducted with patients diagnosed with age-related macular degeneration (AMD), followed in the ophthalmology department of Nantes University Hospital and treated with intravitreal injections. These interviews are structured around three main themes in order to better understand:
The experience and perception of the current treatment by the patients
Their perceptions, expectations, and potential concerns regarding gene therapy
Their perception and understanding of decision-making autonomy in their health decisions
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| Measure | Description | Time Frame |
|---|---|---|
| The experience and current treatment outcomes perceived by patients | Semi-structured interviews | 1 months |
| Measure | Description | Time Frame |
|---|---|---|
| Patients' perceptions, expectations, and potential concerns regarding gene therapy | Semi-structured interviews | 1 month |
| Patients' perception and representation of decisional autonomy in their health decisions |
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Inclusion Criteria:
Exclusion Criteria:
Patients with atrophic AMD (Age-related Macular Degeneration) Patients with other degenerative retinal diseases than AMD, Patients with with associated cognitive disorders.
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exsudative AMD patients in o^pthalmology department in CHU Nantes
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Helene Masse, M.D | Contact | +33 2 53 48 28 57 | helene.masse@chu-nantes.fr | |
| Alexandra Poinas, PhD | Contact | +33 2 53 48 28 57 | alexandra.poinas@chu-nantes.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU Nantes - Ophthalmology Department | Recruiting | Nantes | Nantes | 44000 | France |
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| ID | Term |
|---|---|
| D008268 | Macular Degeneration |
| ID | Term |
|---|---|
| D012162 | Retinal Degeneration |
| D012164 | Retinal Diseases |
| D005128 | Eye Diseases |
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Semi-structured interviews
| 1 month |