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Dementia Phenotypes in Primary Care, Hospital, and National Mortality Registries

11 settembre 2015 aggiornato da: Harry Hemingway, University College, London

Dementia Phenotypes in Primary Care, Hospital, and National Mortality Registries: a Cohort Study in Linked Electronic Health Records

Most patients with dementia in the UK use their local hospitals and general (family) practices throughout their illness. Linked electronic health records from primary care, hospital and death certificates records therefore provide useful information about the diagnosis and prognosis of patients who develop dementia.

In this study we will assess the validity of dementia diagnoses in linked primary care, hospital and death records, by examining the timing of important health transitions in patients with recorded dementia, and we will estimate the lifetime risk of recorded dementia in different age and sex groups

Panoramica dello studio

Stato

Sconosciuto

Condizioni

Descrizione dettagliata

Dementia is a clinical syndrome with insidious onset that is difficult to diagnose in its earliest stages. Presentation to healthcare depends not only upon the rates of disease progression, but also on social support, recognition by clinicians, and patients' and carers' fear of diagnosis. Maintaining complete follow up in cohorts of patient with dementia is difficult, because patients with dementia are frequently lost to follow up.

Most patients with dementia in the UK use their local hospitals and general (family) practices throughout their illness. Linked electronic health records from primary care, hospital and death certificates records should therefore provide useful information about the diagnosis and prognosis of patients who develop dementia with minimal loss to follow-up rates and improved completeness of diagnosis.

Demonstrating that patients with recorded dementia have an earlier onset of typical symptoms, functional impairment and death than patients in the general population would support the veracity of diagnosed dementia recorded in electronic health records and its use as an outcome or exposure in cohort studies and for evaluating policy. Previous studies have found that dementia is poorly recorded in routine clinical practice in comparison to face-to-face studies, although this varies by setting and region. However, ascertainment may be improved by examining linked, longitudinal resources. Comparing the lifetime risk of dementia calculated from linked electronic health records with lifetime risks from other sources will also be a useful information to support the use of linked electronic health records in dementia research.

Electronic health records contain information on important health transitions in patients with dementia: from the earliest stage of the illness (depression, anxiety, memory complaints); the development of cognitive impairment that manifest as loss of capacity or missed appointments; and significant functional impairment, with admission to nursing homes or hospital admission. In this study, we will assess the validity of dementia diagnoses in linked primary care, hospital and death records, by examining the timing of important health transitions in patients with recorded dementia, and estimate the lifetime risk of recorded dementia in different age and sex groups.

Tipo di studio

Osservativo

Iscrizione (Anticipato)

51000

Contatti e Sedi

Questa sezione fornisce i recapiti di coloro che conducono lo studio e informazioni su dove viene condotto lo studio.

Luoghi di studio

      • London, Regno Unito
        • London Farr Institute of Health Informatics

Criteri di partecipazione

I ricercatori cercano persone che corrispondano a una certa descrizione, chiamata criteri di ammissibilità. Alcuni esempi di questi criteri sono le condizioni generali di salute di una persona o trattamenti precedenti.

Criteri di ammissibilità

Età idonea allo studio

18 anni e precedenti (Adulto, Adulto più anziano)

Accetta volontari sani

Sessi ammissibili allo studio

Tutto

Metodo di campionamento

Campione non probabilistico

Popolazione di studio

Patients registered in English general practices contributing with data to the CALIBER research platform from 1997 onward.

Descrizione

Inclusion Criteria:

  • Patients aged 18 years and over
  • Registered with a participating general practice during the study period
  • Minimum one year of records prior to study entry meeting CPRD data quality criteria
  • Followed on or after 1 January 1997

Exclusion Criteria:

  • Patients without recorded gender
  • Less than 1 year of follow-up between study entry and date of administrative censoring

Piano di studio

Questa sezione fornisce i dettagli del piano di studio, compreso il modo in cui lo studio è progettato e ciò che lo studio sta misurando.

Come è strutturato lo studio?

Dettagli di progettazione

Coorti e interventi

Gruppo / Coorte
Intervento / Trattamento
Dementia
Patients with a recorded diagnosis of dementia in primary or secondary care
This study is based on the retrospective analysis of linked electronic health records.
Non-dementia
Patients without a recorded diagnosis of dementia in primary or secondary care
This study is based on the retrospective analysis of linked electronic health records.

Cosa sta misurando lo studio?

Misure di risultato primarie

Misura del risultato
Misura Descrizione
Lasso di tempo
Proportion of patients with dementia diagnosis (any type) in primary care that also are recorded in secondary care
Lasso di tempo: 10 years
10 years
Factors associated with dementia diagnosis (any type) recording in mortality data only
Lasso di tempo: 10 years
These will be estimated from multivariable logistic regression models
10 years
Symptoms associated with subsequent diagnosis of dementia
Lasso di tempo: 10 years
These will be estimated from multivariable logistic regression models
10 years
Lifetime risk of dementia (any type)
Lasso di tempo: 10 years
10 years
Lifetime risk of mortality associated with dementia (any time)
Lasso di tempo: 10 years
10 years
Factors associated with dementia diagnosis (any type) recording in secondary care only
Lasso di tempo: 10 years
These will be estimated from multivariable logistic regression models
10 years
Factors associated with dementia diagnosis (any type) recording in primary care only
Lasso di tempo: 10 years
These will be estimated from multivariable logistic regression models
10 years
Proportion of patients with dementia diagnosis (any type) in primary care that also are recorded in mortality data
Lasso di tempo: 10 years
10 years
Proportion of patients with dementia diagnosis (any type) in secondary care that also are recorded in mortality data
Lasso di tempo: 10 years
10 years

Misure di risultato secondarie

Misura del risultato
Lasso di tempo
Proportion of patients with Alzheimer's disease in primary care that are also diagnosed in secondary care
Lasso di tempo: 10 years
10 years
Proportion of patients with vascular dementia in primary care that are also diagnosed in secondary care
Lasso di tempo: 10 years
10 years
Lifetime risk of Alzheimer's disease
Lasso di tempo: 10 years
10 years
Lifetime risk of vascular dementia
Lasso di tempo: 10 years
10 years
Lifetime risk of mortality associated with Alzheimer's disease
Lasso di tempo: 10 years
10 years
Proportion of patients with Alzheimer's disease in primary care that are also diagnosed in mortality data
Lasso di tempo: 10 years
10 years
Proportion of patients with Alzheimer's disease in secondary care that are also recorded in mortality data
Lasso di tempo: 10 years
10 years
Proportion of patients with vascular dementia in primary care that are also recorded in secondary care
Lasso di tempo: 10 years
10 years
Proportion of patients with vascular dementia in secondary care that are also recorded in mortality data
Lasso di tempo: 10 years
10 years

Collaboratori e investigatori

Qui è dove troverai le persone e le organizzazioni coinvolte in questo studio.

Studiare le date dei record

Queste date tengono traccia dell'avanzamento della registrazione dello studio e dell'invio dei risultati di sintesi a ClinicalTrials.gov. I record degli studi e i risultati riportati vengono esaminati dalla National Library of Medicine (NLM) per assicurarsi che soddisfino specifici standard di controllo della qualità prima di essere pubblicati sul sito Web pubblico.

Studia le date principali

Inizio studio

1 settembre 2015

Completamento primario (Anticipato)

1 ottobre 2015

Completamento dello studio (Anticipato)

1 dicembre 2015

Date di iscrizione allo studio

Primo inviato

3 settembre 2015

Primo inviato che soddisfa i criteri di controllo qualità

11 settembre 2015

Primo Inserito (Stima)

15 settembre 2015

Aggiornamenti dei record di studio

Ultimo aggiornamento pubblicato (Stima)

15 settembre 2015

Ultimo aggiornamento inviato che soddisfa i criteri QC

11 settembre 2015

Ultimo verificato

1 settembre 2015

Maggiori informazioni

Termini relativi a questo studio

Queste informazioni sono state recuperate direttamente dal sito web clinicaltrials.gov senza alcuna modifica. In caso di richieste di modifica, rimozione o aggiornamento dei dettagli dello studio, contattare register@clinicaltrials.gov. Non appena verrà implementata una modifica su clinicaltrials.gov, questa verrà aggiornata automaticamente anche sul nostro sito web .

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