Patients With Alzheimer's Disease or Re… | Clinical Trial

Key information

Conditions

Alzheimer Disease, Early Onset Alzheimer Disease Basal Ganglia Diseases Brain Diseases Central Nervous System Diseases Dementia Frontotemporal Lobar Degeneration Lewy Body Disease Mental Disorders Metabolic Diseases Movement Disorders Nervous System Diseases Neurocognitive Disorders Neurodegenerative Diseases Nutritional and Metabolic Diseases Parkinsonian Disorders Proteostasis Deficiencies Synucleinopathies TDP-43 Proteinopathies Tauopathies

Sex eligibility

All sexes

Study type

Observational

Primary location

Hôpital Roger Salengro, CHRU

Lille, France

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

the delay between the diagnosis and the first symptomsIdentification of factors related with diagnosis delay

Time frame: 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 outcomes

Comparison of patient profiles followed at the CMRR-CNR-MAJ Lille and those who are not.

Time frame: 10 years

The different profiles are defined according to composite measures of socio-demographic type
Comparison of patients characteristics followed at the CMRR-CNR-MAJ Lille and those who are not.Impact of the diagnosis on YOD

Time frame: 10 years

The different characteristics 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

Time frame: 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

Time frame: 10 years

Identification of medico-social issues taht have been encountered by YOD patients during the care

Sponsors and collaborators

Lead sponsor

University Hospital, Lille

Other

Registry information

Acronym: PARMAAJJ

Important dates

Study start: 2018
Primary completion: 2019
Study completion: 2019
First posted: Apr 25, 2018
Registry last updated: Mar 25, 2021

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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