Patients With Alzheimer's Disease or Related Youth Disease

Completed

• Conditions: Alzheimer Disease, Early Onset; Frontotemporal Lobar Degeneration; Lewy Body Disease

• Registration Number: NCT03508024
• Lead Sponsor: University Hospital, Lille

Brief Summary

This study aims to determine factors related to diagnosis delay for patients with young onset dementia (first symptoms before 60 years old) who live in North of France.

Detailed Description

Not available

Study Timeline

• Study First Submitted: 2017-11-08
• Study Start: 2018-01-05
• Status Verified: 2018-04
• Study First Submitted QC: 2018-04-24
• Study First Posted: 2018-04-25
• Primary Completion: 2019-04-25
• Study Completion: 2019-04-25
• Last Update Submitted: 2021-03-24
• Last Update Posted: 2021-03-25

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 220

Inclusion Criteria

As part of this study, patients will be considered:

• Residing in the departments of Nord (59) and Pas-de-Calais (62),
• whose diagnosis of Alzheimer's disease or related illness (DLFT, DCL) was made and announced,
• Whose diagnosis of illness was made after 2007
• whose first symptoms appeared before the age of 60 Patients included in the COMAJ cohort and those who completed the Pathways medical and social booklet will have to meet these criteria to be selected for this study.

As part of the survey, caregivers of patients meeting the above criteria and the following two will be recruited:

• Having consulted or being followed by liberal neurologists or in hospital memory consultations (excluding CMRR-CNR-MAJ Lille) of the departments of Nord and Pas-de-Calais,
• Not monitored at the CMRR-CNR-MAJ Lille (ad hoc notice possible). The caregiver is defined as a family member or friend who helps regularly by doing the necessary tasks so that the sick person can keep as much autonomy as possible.

Exclusion Criteria

• aged under 18
• no social coverage
• refusal to sign informed consent form

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
the delay between the diagnosis and the first symptomsIdentification of factors related with diagnosis delay	10 years	To determine the factors associated with diagnostic delay in young patients (early symptoms before age 60) with Alzheimer's disease or related degenerative disease (Fronto-temporal Lobar Degeneration , Lewy Body Dementia )

Secondary Outcome Measures

Name	Time	Method
Comparison of patient profiles followed at the CMRR-CNR-MAJ Lille and those who are not.	10 years	The different profiles are defined according to composite measures of socio-demographic type
the percentage of patients who have had a lack of information about the disease and possible aids	10 years	Identification of medico-social issues taht have been encountered by YOD patients during the care
the percentage of refusal or delay of treatment of certain medico-social aids by the competent authorities	10 years	Identification of medico-social issues taht have been encountered by YOD patients during the care
Comparison of patients characteristics followed at the CMRR-CNR-MAJ Lille and those who are not.Impact of the diagnosis on YOD	10 years	The different characteristics are defined according to composite measures of socio-demographic type

Trial Locations

Locations (1)

Hôpital Roger Salengro, CHRU; 🇫🇷 Lille, France