Evidence map›Paper›PMID 28018980›Full record

ArticleWellcome open research2016

The LonDownS adult cognitive assessment to study cognitive abilities and decline in Down syndrome.

Carla M Startin, Sarah Hamburg, Rosalyn Hithersay, Amy Davies, Erin Rodger, Nidhi Aggarwal, Tamara Al-Janabi, André Strydom

Open access · goldAbstract read
In one paragraph

Article in Wellcome open research, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
48citing papers in PubMed, 2 pooled it
7.0field-weighted citation impact, top 3% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

48 citing papers in PubMed, 2 syntheses or guidelines pooled it, 68 citations in OpenAlex.

  1. Early Markers for Dementia in the Intellectual Disability Population: A Systematic Literature Review.Journal of applied research in intellectual disabilities : JARID · 2025
    Pooled it
  2. Pooled it
  3. Trial
  4. Adaptive and Maladaptive Behaviours and Their Cognitive Correlates in Aging Adults With Down Syndrome.Journal of applied research in intellectual disabilities : JARID · 2026
    Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. Article
  10. Characterizing the emergence of amyloid and tau burden in Down syndrome.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Article
  11. Article
  12. Article
  13. Article
  14. Article
  15. Psychometric properties of inhibitory control measures among youth with Down syndrome.Journal of intellectual disability research : JIDR · 2023
    Article
  16. Complement dysregulation and Alzheimer's disease in Down syndrome.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023
    Article
  17. Article
  18. Review
  19. Review
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 2 institutions in 1 country.

Carla M StartinUCL Division of Psychiatry, University College London, London, UK.ORCID 0000-0001-9261-9924
Sarah HamburgUCL Division of Psychiatry, University College London, London, UK.
Rosalyn HithersayUCL Division of Psychiatry, University College London, London, UK.
Amy DaviesUCL Division of Psychiatry, University College London, London, UK.
Erin RodgerUCL Division of Psychiatry, University College London, London, UK.
Nidhi AggarwalUCL Division of Psychiatry, University College London, London, UK.
Tamara Al-JanabiUCL Division of Psychiatry, University College London, London, UK.
André StrydomUCL Division of Psychiatry, University College London, London, UK.
University College London · GBUniversity of Surrey · GB

Funding

Wellcome Trust 098330
6 · The paper itself

Abstract

backgroundDown syndrome (DS), the most common genetic cause of intellectual disability, is associated with an ultra-high risk of developing Alzheimer's disease. However, there is individual variability in the onset of clinical dementia and in baseline cognitive abilities prior to decline, particularly in memory, executive functioning, and motor coordination. The LonDownS Consortium aims to determine risk and protective factors for the development of dementia and factors relating to cognitive abilities in people with DS. Here we describe our cognitive test battery and related informant measures along with reporting data from our baseline cognitive and informant assessments.

methodsWe developed a cognitive test battery to assess general abilities, memory, executive function, and motor coordination abilities in adults with DS, with informant ratings of similar domains also collected, designed to allow for data on a broad range of participants. Participants (n=305) had a range of ages and abilities, and included adults with and without a clinical diagnosis of dementia.

resultsResults suggest the battery is suitable for the majority of adults with DS, although approximately half the adults with dementia were unable to undertake any cognitive task. Many test outcomes showed a range of scores with low floor and ceiling effects. Non-verbal age-adjusted IQ scores had lower floor effects than verbal IQ scores. Before the onset of any cognitive decline, females aged 16-35 showed better verbal abilities compared to males. We also identified clusters of cognitive test scores within our battery related to visuospatial memory, motor coordination, language abilities, and processing speed / sustained attention.

conclusionsOur further studies will use baseline and longitudinal assessments to explore factors influencing cognitive abilities and cognitive decline related to ageing and onset of dementia in adults with DS.

Indexed as

Alzheimer’s diseasecognitiondementiaDown syndromeexecutive functionintellectual disabilitymemorymotor coordination

Identifiers

PMID28018980
PMCPMC5176078
OpenAlexW2550841843

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.