Patients With Alzheimer's Disease or Related Youth Disease

NCT03508024 | Completed

• 2 other identifiers: NI_2016_392017-A00486-47
• Study Type: observational
• Target: 220
• Locations: 1 country
• Sites: 1

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.

Conditions

Alzheimer Disease, Early Onset; Lewy Body Disease; Frontotemporal Lobar Degeneration

Outcome Measures

Primary Outcomes (1)

• 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 Outcomes (4)

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

  10 years

• 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 percentage of patients who have had a lack of information about the disease and possible aids

  10 years

• the percentage of refusal or delay of treatment of certain medico-social aids by the competent authorities

  10 years

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Probability Sample

Study Population

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

You may qualify if:

• 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.

You may not qualify if:

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

Sponsors & Collaborators

• University Hospital, Lille: lead

Study Sites (1)

Hôpital Roger Salengro, CHRU

Lille, France

Location

MeSH Terms

Conditions

Alzheimer Disease; Lewy Body Disease; Frontotemporal Lobar Degeneration

Condition Hierarchy (Ancestors)

Dementia; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Tauopathies; Neurodegenerative Diseases; Neurocognitive Disorders; Mental Disorders; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; TDP-43 Proteinopathies; Proteostasis Deficiencies; Metabolic Diseases; Nutritional and Metabolic Diseases

Study Officials

• Florence Pasquier, MD, PhD

  University Hospital, Lille

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 8, 2017
• First Posted: April 25, 2018
• Study Start: January 5, 2018
• Primary Completion: April 25, 2019
• Study Completion: April 25, 2019
• Last Updated: March 25, 2021

Record last verified: 2018-04

Locations

FR (1)