Patients With Alzheimer's Disease or Related Youth Disease (PARMAAJJ)

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.

Study Overview

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

• Study Type: Observational
• Enrollment (Actual): 220

Contacts and Locations

Study Locations

• France
  • Lille, France
    • Hôpital Roger Salengro, CHRU

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Probability Sample

Study Population

Patients with a diagnosis of Alzheimer disease, Lewy Bodies Dementia or FrontoTemporal Lobar Degeneration and their caregivers

Description

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 Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
the delay between the diagnosis and the first symptomsIdentification of factors related with diagnosis delay	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 )	10 years

Secondary Outcome Measures

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

Collaborators and Investigators

• Sponsor: University Hospital, Lille
• Investigators: Principal Investigator: Florence Pasquier, MD, PhD, University Hospital, Lille

Study record dates

Study Major Dates

• Study Start (Actual): January 5, 2018
• Primary Completion (Actual): April 25, 2019
• Study Completion (Actual): April 25, 2019

Study Registration Dates

• First Submitted: November 8, 2017
• First Submitted That Met QC Criteria: April 24, 2018
• First Posted (Actual): April 25, 2018

Study Record Updates

• Last Update Posted (Actual): March 25, 2021
• Last Update Submitted That Met QC Criteria: March 24, 2021
• Last Verified: April 1, 2018

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Metabolic Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; TDP-43 Proteinopathies; Proteostasis Deficiencies; Dementia; Tauopathies; Alzheimer Disease; Lewy Body Disease; Frontotemporal Lobar Degeneration
• Other Study ID Numbers: NI_2016_39; 2017-A00486-47 (Other Identifier: ID-RCB number, ANSM)

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No