Clinical Trials Logo

Clinical Trial Summary

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


Clinical Trial Description

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. ;


Study Design

Observational Model: Cohort, Time Perspective: Retrospective


Related Conditions & MeSH terms


NCT number NCT02549872
Study type Observational
Source University College, London
Contact
Status Active, not recruiting
Phase N/A
Start date September 2015
Completion date December 2015

See also
  Status Clinical Trial Phase
Recruiting NCT03676881 - Longitudinal Validation of a Computerized Cognitive Battery (Cognigram) in the Diagnosis of Mild Cognitive Impairment and Alzheimer's Disease
Recruiting NCT03462485 - Pilot Study of the Effects of Playing Golf on People With Dementia N/A
Not yet recruiting NCT03677284 - Managing Time With Dementia: Effects of Time Assistive Products in People With Dementia N/A
Recruiting NCT03147222 - Function Focused Care: Hip Care at Home N/A
Completed NCT03357328 - Therapy Light Rooms for Improved Sleep in Dementia Patients N/A
Not yet recruiting NCT03583879 - Using Gait Robotics to Improve Symptoms of Parkinson's Disease N/A
Not yet recruiting NCT03648502 - Validation of Cognitive Screenings for the Hearing Impaired N/A
Recruiting NCT02774720 - Centre- Versus Home-based Exercise for MCI and Early Dementia N/A
Active, not recruiting NCT03035201 - COcoa Supplement and Multivitamin Outcomes Study for the Mind
Enrolling by invitation NCT02921477 - Study for the Use of TKIs for Treatment of Cognitive Decline Due to Degenerative Dementias Phase 1
Not yet recruiting NCT02845830 - Trajectories of Quality of Life by the Elderly in Early Phase of Dementia N/A
Completed NCT02953574 - Daily Sleep Enhancement for Hospitalized People With Dementia Following a Nursing Protocol N/A
Recruiting NCT02260141 - Treating Alzheimer's and Dementia With D-ribose Phase 2
Recruiting NCT02317523 - Alzheimer's Caregiver Coping: Mental and Physical Health N/A
Recruiting NCT02260167 - Treatment of Alzheimer's and Dementia With the Metabolism, Infections, Nutrition, Drug Elimination (MIND) Protocol Phase 2
Recruiting NCT02813434 - Cerebral Amyloid Imaging Using Florbetapir (AV-45) Phase 3
Enrolling by invitation NCT02233530 - IDEA Study Cognitive Stimulation Therapy (CST) Trial in Nigeria N/A
Completed NCT02286791 - Mindful Awareness Program for the Prevention of Dementia: A Randomized Controlled Trial N/A
Completed NCT02229474 - IDEA Study Cognitive Stimulation Therapy (CST) Trial in Tanzania N/A
Completed NCT01441726 - Palliative and End-of-life Care in Advanced Dementia: Evaluation of a Program of Organization of Care in Long-term Care N/A