Alzheimer DiseaseNCT06621758
Communication Regarding Preclinical Dementia Diagnostic and Diagnostic Disclosure Among Patients with MCI and SCD
An observational study of Alzheimer Disease and Mild Cognitive Impairment (MCI), run by Danish Dementia Research Centre.
Trial summary
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. Read more about this study
- Who is it for?
- Ages 40 to 80 years
- Conditions the study is for
- Alzheimer Disease, Mild Cognitive Impairment (MCI), Subjective Cognitive Decline (SCD)
- What is being tested?
- questionnaire
- How many people
- 120 participants
- Where
- No sites listed yet
- Study dates
- 15 Oct 2024to 1 Aug 2026
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 40 to 80 years
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: 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.
Who may be able to join
- Diagnosed with SCD or MCI
- Lumbar puncture performed during the diagnostic process
- Age at or below 80 years
- MMSE at or above 24
- Attended the diagnostic disclosure visit together with the individual diagnosed with SCD or MCI
Who cannot join
- Diagnosis of current major psychiatric disorder (schizophrenia, bipolar disorder, psychosis)
- Current excessive alcohol intake or substance abuse
Trial locations and contacts
No sites are listed yet.
About this study
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.
Read the detailed description
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.
- Being tested
- questionnaire
- Keywords
- communication, biomarkers, counseling, diagnostic disclosure, MCI, SCD
- Medical subject headings
- Alzheimer Disease, Cognitive Dysfunction, Communication
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
questionnaireOther
Questionnaire regarding biomarker counseling and diagnostic disclosure
| Study group | Role | What they receive |
|---|---|---|
| MCI | Individuals diagnosed with mild cognitive impairment (MCI) Receives: Other: questionnaire | |
| SCD | Individuals diagnosed with subjective cognitive decline (SCD) Receives: Other: questionnaire |
What is being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: From enrollment to the second questionnaire after 6 weeks
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted1 Oct 2024
- Study start15 Oct 2024 (estimated)
- Primary completion1 Feb 2026 (estimated)
- Study completion1 Aug 2026 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Alzheimer DiseaseStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 120 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Danish Dementia Research Centre
- Sponsor type
- Research network
- Collaborators
- Toulouse University Hospital, Department of Geriatric & Internal Medicine, France, Universitair Ziekenhuis Brussel, Department of Neurology, Belgium, University Medical Centre Ljubljana, Department of Neurology, Slovenia
- Responsible party
- Principal investigator, Kristian Steen Frederiksen, MD, Danish Dementia Research Centre
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06621758
- Sponsor's protocol ID
- F-24061891
- Other IDs
- ERA PerMed JTC2021
- Status last verified
- Sep 2024
- First submitted
- 27 Sep 2024
- Last updated
- 1 Oct 2024
- Results posted
- No
- Data monitoring committee
- Yes
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 1 Oct 2024. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Communication Regarding Preclinical Dementia Diagnostic and Diagnostic Disclosure Among Patients with MCI and SCD
- ClinicalTrials.gov ID
- NCT06621758
- Acronym / sponsor ID
- F-24061891
- Keywords
- communication, biomarkers, counseling, diagnostic disclosure, MCI, SCD
- Study type
- Observational
- Recruitment status
- Unknown status
- Enrolment
- 120 participants (estimated)
- Lead sponsor
- Danish Dementia Research CentreResearch network
- Collaborators
- Toulouse University Hospital, Department of Geriatric & Internal Medicine, France, Universitair Ziekenhuis Brussel, Department of Neurology, Belgium, University Medical Centre Ljubljana, Department of Neurology, Slovenia
- Study start
- 15 Oct 2024 (estimated)
- Primary completion
- 1 Feb 2026 (estimated)
- Study completion
- 1 Aug 2026 (estimated)
- First posted
- 1 Oct 2024 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
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.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| MCI | – | Other: questionnaireIndividuals diagnosed with mild cognitive impairment (MCI) |
| SCD | – | Other: questionnaireIndividuals diagnosed with subjective cognitive decline (SCD) |
Who may qualify
- Ages
- 40 to 80 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- 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.
Key inclusion criteria (5 listed)
- Diagnosed with SCD or MCI
- Lumbar puncture performed during the diagnostic process
- Age at or below 80 years
- MMSE at or above 24
- Attended the diagnostic disclosure visit together with the individual diagnosed with SCD or MCI
Key exclusion criteria (2 listed)
- Diagnosis of current major psychiatric disorder (schizophrenia, bipolar disorder, psychosis)
- Current excessive alcohol intake or substance abuse
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| questionnaireQuestionnaire regarding biomarker counseling and diagnostic disclosure | Other | MCI, SCD |
Primary outcome
Important issues in communication
Time frame: From enrollment to the second questionnaire after 6 weeks
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.
Results and safety
Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 1 Oct 2024.
- Individual participant dataSharing planned: Undecided
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Questions about this trial
What is this clinical trial studying?
An observational study of Alzheimer Disease and Mild Cognitive Impairment (MCI), run by Danish Dementia Research Centre.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 5 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: status not confirmed, as of the sponsor's last update on 1 Oct 2024. Status can change between updates, so confirm with the study contact before making plans.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
Results are not available in the source record.
How can a doctor refer a patient or contact the research team?
Contact Marie Bruun, MD, PhD (+45 35451910, marie.bruun@regionh.dk), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Important issues in communication (time frame: From enrollment to the second questionnaire after 6 weeks). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 1 Oct 2024.