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| ID | Type | Description | Link |
|---|---|---|---|
| ERA PerMed JTC2021 | Other Identifier | European Commission |
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| Name | Class |
|---|---|
| Toulouse University Hospital, Department of Geriatric & Internal Medicine, France | UNKNOWN |
| Universitair Ziekenhuis Brussel, Department of Neurology, Belgium | UNKNOWN |
| University Medical Centre Ljubljana, Department of Neurology, Slovenia |
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The study investigate what information individuals with SCD or MCI and their co-participant would like to receive during pre-diagnostic counseling and diagnostic disclosure, and how this information should be conveyed.
Improved diagnostic work-up and the introduction of disease-modifying treatment have led to a shift towards earlier diagnosis. However, there are a need for better understanding of how best to communicate about biomarker use, assessment, and results in individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI).
Objective:
The overarching objective of this study is:
To understand what information individuals with SCD or MCI and their co-participant would like to receive during pre-diagnostic counseling and diagnostic disclosure, and how this information should be conveyed.
Methods: a prospective survey study Persons diagnosed with SCD or MCI and co-participants will be recruited consecutively from the memory clinic, Copenhagen University Hospital - Rigshospitalet (Denmark), Toulouse University Hospital, (France), University Medical Centre Ljubljana (Slovenia) and Universitair Ziekenhuis Brussel (Belgium)
Approximately 30 persons and respective co-participants will be included from each hospital over a period of 12 months.
Each participating person and co-participant will be asked to complete a very brief questionnaire immediately after disclosure of the diagnosis, and another questionnaire 2-6 weeks after the disclosure visit.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| MCI | Individuals diagnosed with mild cognitive impairment (MCI) |
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| SCD | Individuals diagnosed with subjective cognitive decline (SCD) |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| questionnaire | Other | Questionnaire regarding biomarker counseling and diagnostic disclosure |
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| Measure | Description | Time Frame |
|---|---|---|
| Important issues in communication | Rating of which issues are important for persons with SCD or MCI and their co-participant in the pre-diagnostic counseling and diagnostic disclosure communication. | From enrollment to the second questionnaire after 6 weeks |
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Inclusion Criteria:
Exclusion Criteria:
Inclusion criteria for the co-participant:
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Individuals diagnosed with SCD or MCI and co-participants will be recruited consecutively from the memory clinic, Copenhagen University Hospital - Rigshospitalet (Denmark), Toulouse University Hospital, (France), University Medical Centre Ljubljana (Slovenia) and Universitair Ziekenhuis Brussel (Belgium)
Approximately 30 persons and respective co-participants will be included from each hospital.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Marie Bruun, MD, PhD | Contact | +45 35451910 | marie.bruun@regionh.dk | |
| Kristian S Frederiksen, MD, PhD | Contact | +45 35456922 | kristian.steen.frederiksen@regionh.dk |
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| ID | Term |
|---|---|
| D000544 | Alzheimer Disease |
| D060825 | Cognitive Dysfunction |
| D003142 | Communication |
| ID | Term |
|---|---|
| D003704 | Dementia |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D024801 | Tauopathies |
| D019636 | Neurodegenerative Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D003072 | Cognition Disorders |
| D001519 | Behavior |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |
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