An investigation of the role of brain amyloid in cognition, brain atrophy and Alzheimer s disease in Down s syndrome

Lead Research Organisation: University of Cambridge
Department Name: Psychiatry

Abstract

In the UK there are about 60,000 people with Down s syndrome (DS). Like the general population, people with DS are living longer. As a group they have the highest age-related risk for developing dementia due to Alzheimer?s disease (AD) at a relatively young age - 50% of people with DS develop AD by the age of 59 years (compared to less than 1% of the general population). This places a great burden on individuals, families and society.

We do not know what causes AD but there is evidence that an excess deposition of a protein called beta-amyloid in the brain is a culprit early in the disease process resulting in a cascade of effects on the brain and in brain-cell death (observed in AD) and dementia. People with DS produce beta-amyloid in excess as they are born with an extra copy of the gene coding for the precursor of beta-amyloid. Post-mortem studies of brain tissue from people with DS have revealed that beta-amyloid is widely present at a very young age and is found in all who are in their forties or older.

A recently developed method for detecting beta-amyloid deposition using PET (positron emission tomography) brain scanning technology together with a beta-amyloid tracer (Pittsburgh Compound-B) can safely and reliably measure the amount and distribution of beta-amyloid in the brain during life. Studies have been done in AD affecting the general population but none in people with DS.

We have completed a pilot study using this technique and found that it was acceptable to people with DS, and it can detect beta-amyloid in their brains. We are now proposing a clinical study with 60 participants using this technique to help us answer questions about the effect that excess beta-amyloid has on the brain and on mental (or cognitive) functioning (e.g. memory), and the risk of dementia. Together with the use of specific cognitive assessments, we will scan people with DS once at the start and again after two years. We will investigate the relationship between cerebral amyloid deposition, brain atrophy and cognitive decline and dementia. New potentially preventative treatments are being developed for AD that target amyloid turnover in the brain. This study will inform such developments and people with DS may be the first to benefit if they are safe and effective. Observations in people with DS may also inform treatments of AD in the general population.

Technical Summary

Adults with Down?s syndrome (DS) are at high risk for developing Alzheimer s disease (AD) early in life. The extra-copy of the Amyloid Precursor Protein gene due to trisomy 21 leads to an increase in beta-amyloid production. It is widely accepted that beta-amyloid plays a central role in the pathogenesis of AD, but the nature of this is not fully understood. The study of AD in DS enables investigation of beta-amyloid and its impact on cerebral atrophy, cognition and dementia thereby informing the development of preventative therapies specifically those targeting cerebral amyloid turnover.

A new technique that enables the in vivo measurement of cerebral deposition of beta-amyloid using Pittsburgh Compound-B (11C-PiB) with positron emission tomography (PET) has been extensively used in the study of sporadic AD, but not in DS. We have successfully completed a pilot study that has demonstrated that the technique is feasible and acceptable to people with DS and that beta-amyloid can be detected. We are now proposing a clinical study to measure cerebral beta-amyloid in vivo in adults with DS at different stages (pre-diagnosis and diagnosis stages) of AD. Using cross-sectional and longitudinal designs, dynamic 11C-PiB-PET-MRI scanning, MRI voxel-based measures of regional cerebral morphology, and diffusion tensor MRI to evaluate white matter pathways, our aims are to investigate the relationship between cerebral beta-amyloid distribution and load in people with DS in vivo with the following:
? Regional and generalised cerebral atrophy and white matter pathway integrity;
? Specific cognitive deficits
? Clinical evidence of: a) the pre-dementia state (defined as the ?frontal-like? dementia of DS), and b) AD.

In this four-year study we will recruit 60 participants with DS between 35 and 55 years of age with mild to moderate degree of intellectual disability, where 30 will have no evidence of AD, 10 will have clinical evidence of AD and 20 will have symptoms suggestive of a pre-dementia state for AD. All will have full diagnostic and neuropsychological assessments specifically developed to assess dementia in people with intellectual disabilities and the above scans at the beginning of the study. In the second stage, we will re-scan two age-matched groups with DS without dementia divided based on being amyloid positive or negative to investigate cerebral and clinical change over time. Between and within participant analyses will be used to establish the relationship between cerebral amyloid deposition, atrophy, white matter tract integrity and clinical status.

Publications


10 25 50
 
Description Health inequalities of people with Down's syndrome
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description Invited presentation at the launch of health guidance at the Houses of Parliament attended by the Minister
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
URL http://www.hywelfrancis.co.uk/pressreleases/2014/180314_2.php
 
Description AN INVESTIGATION OF THE ROLE OF BRAIN AMYLOID IN COGNITION,BRAIN ATROPHY AND ALZHEIMER'S DISEASE IN DOWN'S SYNDROME
Amount £983,841 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 10/2011 
End 09/2015
 
Description Defeat Dementia in Down's Syndrome
Amount £30,000 (GBP)
Organisation Down's Syndrome Association 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 02/2016 
End 05/2016
 
Description Departmental MRC PhD studentship
Amount £72,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 10/2013 
End 09/2016
 
Description Neurodegeneration in Aging Down's (NIAD)
Amount $1,785,068 (USD)
Funding ID 1U01AG05140-01 
Organisation National Institute on Aging 
Sector Public
Country United States of America
Start 09/2015 
End 04/2020
 
Description Research Grant
Amount £69,860 (GBP)
Organisation Baily Thomas Charitable Fund 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 01/2013 
End 12/2015
 
Description Support Costs
Amount £19,080 (GBP)
Organisation Addenbrooke's Charitable Trust (ACT) 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 08/2012 
End 08/2014
 
Description The impact of the accumulation of brain beta-amyloid and tau with ageing on the development of Alzheimer's disease in Down's syndrome adults: a cross-sectional and longitudinal study.
Amount £278,109 (GBP)
Funding ID RG79092 
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 06/2016 
End 05/2018
 
Description A study of mitochondrial function in Down's syndrome 
Organisation Newcastle University
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution We have undertaken a study of mitochondrial function in people with Down's syndrome (DS) using MRS to determine PCr recovery time in muscle. We subsequently undertook muscle biopsies which have been processed by our collaborators in Newcastle. Some of the participants were also participants in the present neuroimaging study and we are now looking at the relationship between mitochondrial functioning and cerebral amyloid load and neuropsychological findings.
Collaborator Contribution They undertook the processing and staining of the muscle tissue.
Impact Papers are in preparation.
Start Year 2013
 
Description An investigation of the role of brain amyloid in cognition, brain atrophy and Alzheimer's disease in Down's syndrome 
Organisation Helmholtz Association of German Research Centres
Department German Center for Neurodegenerative Diseases (DZNE)
Country Germany, Federal Republic of 
Sector Public 
PI Contribution This is a partnership on the MRC DS study. We have been responsible for the day to day running of the project, recruitment, clinical assessments and neuroimaging.
Collaborator Contribution Dr Peter Nestor is a grant holder on the MRC grant. Since he moved to Germany he and his group have continued to support neuroimaging analysis and are investigators on the new grants. Our group has led on the PET analysis his group has led on the MRI analysis.
Impact The MRI scan analysis has been led by this group with multi-disciplinary involvement from members of that group. One paper has been published, one of the research assistants on the project has been awarded a PhD based on this work and the other research assistant is about to submit.
Start Year 2011
 
Description Birmingham Community health Care NHS Trust 
Organisation Birmingham Community Healthcare NHS Trust
Department Learning Disability Service
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Public 
PI Contribution Identified as a patient identification centre for the recruitment of participants
Collaborator Contribution Identifying and approaching possible participants with DS
Impact The collaboration is primarily with a clinical psychologist, Sunni Kelsy
Start Year 2013
 
Description Cornwall NHS 
Organisation Cornwall Partnership NHS Foundation Trust
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Public 
PI Contribution The research group have added this NHS trust as a Participant Identification Centre (PIC) to the study. Select clinicians at this trust were provided with materials such as advertisements and DVDs to forward on to patients in their care whom they think may be interested in taking part in the research.
Collaborator Contribution This NHS trust has agreed to act as a PIC for this study. Select clinicians at this site have forwarded information to patients in their care whom they believe would be interested in taking part in the research.
Impact There are no measurable outcomes as of yet.
Start Year 2012
 
Description DSA 
Organisation Down's Syndrome Association
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Charity/Non Profit 
PI Contribution Tony Holland is psychiatric adviser to the DS Association and provides advice particularly on matters relating to dementia. Our group has recently up-dated guidance documents for the DSA on ageing in people with DS and on supporting people with DS who have dementia.
Collaborator Contribution The DSA have sent letters to their membership who have sons/daughters with DS within the age range for our study. Initially this was to those in close proximity to Cambridge and it has recently been expanded outwards.
Impact We have scanned 21 people (target number is 60) so far many recruited through via the DSA (unable to say exactly what percentage).
Start Year 2011
 
Description Dendron 
Organisation Northamptonshire Healthcare NHS Foundation Trust
Department Dementias and Neurodegenerative Diseases Research Network (DeNDRoN)
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution We have met with leads in the network to advise about the study and our requirments with respect to recruitment.
Collaborator Contribution The research project has been adopted by the Dementias and Neurodegenerative Disease Research Network (Dendron ). The network is supporting the recruitment of people with Down's syndrome to the project.
Impact The outputs have been limited at present to raising awareness about the study
Start Year 2011
 
Description Hertfordshire partnership NHS Foundation Trust 
Organisation Hertfordshire Partnership University NHS Foundation Trust
Department Learning Disability Service
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Hospitals 
PI Contribution See below
Collaborator Contribution Helping to recruit possible participants to the research
Impact No recruitment so far
Start Year 2013
 
Description Hft 
Organisation Hft (formerly known as the Home Farm Trust)
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Charity/Non Profit 
PI Contribution Tony Holland is a Trustee of Hft which is a national social care provider for people with learning disabilities.
Collaborator Contribution Hft have approached people with DS they support to ask if they would be willing to take part in the study.
Impact We have scanned 21 people so far many recruited through Hft
Start Year 2011
 
Description Homerton NHS 
Organisation Homerton University Hospital NHS Foundation Trust
Department Community Health Services
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Hospitals 
PI Contribution We have added this NHS trust as a Participant Identification Centre (PIC) to our study.
Collaborator Contribution This NHS trust are acting as a PIC for our study and have forwarded information about the study to several of their patients who might be eligible to take part.
Impact There are no outcomes to report as of yet.
Start Year 2012
 
Description Kate 
Organisation School of Clinical Medicine
Department Department of Psychiatry
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution We have provided our collaborator with contact details of participants in our study who have consented to being contacted by other members of our research group. Many of the participants from our study have now agreed to take part in our collaborator's research study.
Collaborator Contribution This collaboration is adding to the knowledge gathered in our research study by providing data concerning the function of mitochondria in people with Down's syndrome, which may be relevant to the development of dementia in this population.
Impact None to report at this date.
Start Year 2012
 
Description Mersey Care 
Organisation Mersey Care NHS Trust
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Public 
PI Contribution The research group have added this NHS trust as a Participant Identification Centre (PIC) to the study. Select clinicians at this trust were provided with materials such as advertisements and DVDs to forward on to patients in their care whom they think may be interested in taking part in the research.
Collaborator Contribution This NHS trust has agreed to act as a PIC for this study. Select clinicians at this site have forwarded information to patients in their care whom they believe would be interested in taking part in the research.
Impact There are no measurable outcomes as of yet.
Start Year 2012
 
Description Retinal cell degeneration and apoptosis as biomarkers in the eyes. 
Organisation University College London (UCL)
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution The cohort of people with Down's syndrome (DS) together with other cohorts of people with DS we have identified will be invited to be part of a study using an established (Optical Coherence Tomography, OCT) and a new innovative technology (Detection of Apoptosing Retinal Cells, DARC) to study retinal cell loss and apoptosis in the eye to see if these are potential biomarkers for Alzheimer's disease in this population. By using the same cohort we have established for the neuroimaging study we will be able to directly explore the relationship between brain and eye changes.
Collaborator Contribution Our collaborators have developed this new DARC technique and will be undertaking the eye examination as part of this collaboration.
Impact An application has been submitted for additional funding to the Stevenage Bioscience Catalyst - result awaited. It brings together psychiatry and opthalmology in a unique collaboration
Start Year 2014
 
Description Ruma Raha-Chowdury, 
Organisation School of Clinical Medicine
Department John van Geest Centre for Brain Repair
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution We are providing our collaborator with blood samples from people with Down's Syndrome for analysis and have also collected brain tissue at postmortem .
Collaborator Contribution Our collaborators have published one paper and are working on a second.
Impact A paper has been published. Dr Shahid Zaman, a clinician on the Down's syndrome project, contributed to this paper and is an author.
Start Year 2011
 
Description SABP NHS 
Organisation Surrey and Borders Partnership NHS Foundation Trust
Department People's Mental Health and Dementia Services
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Public 
PI Contribution The research group have added this NHS trust as a Participant Identification Centre (PIC) to the study. Select clinicians at this trust were provided with materials such as advertisements and DVDs to forward on to patients in their care whom they think may be interested in taking part in the research.
Collaborator Contribution This NHS trust has agreed to act as a PIC for this study. Select clinicians at this site have forwarded information to patients in their care whom they believe would be interested in taking part in the research.
Impact There are no measurable outcomes as of yet.
Start Year 2012
 
Description SEPT 
Organisation South Essex Partnership University NHS Foundation Trust
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Public 
PI Contribution The research group have added this NHS trust as a Participant Identification Centre (PIC) to the study. Select clinicians at this trust were provided with materials such as advertisements and DVDs to forward on to patients in their care whom they think may be interested in taking part in the research.
Collaborator Contribution This NHS trust has agreed to act as a PIC for this study. Select clinicians at this site have forwarded information to patients in their care whom they believe would be interested in taking part in the research.
Impact There are no measurable outcomes as of yet.
Start Year 2012
 
Description Support to Down's syndrome project University of San Paolo, Brazil 
Organisation University of Sao Paulo
Country Brazil, Federative Republic of 
Sector Academic/University 
PI Contribution Provided guidance to Dr Luciana Fonesca and colleagues and a letter of support for their application for funding to the Brazilian Government for a study of ageing in people with Down's Syndrome. They have also translated the CAMDEX assessment which is used for the diagnosis of dementia in people with intellectual disabilities and was developed by our group.
Collaborator Contribution They have prepared the application and submitted to their national funding organisation. Results awaited.
Impact Grant application to be submitted by their research group. Tony Holland named as an advisor.
Start Year 2015
 
Description The London DS consortium 
Organisation University College London (UCL)
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution This is a group of clinical and basic science researchers at University College London undertaking related work into DS and dementia.
Collaborator Contribution They have undertaken genotyping for us and also helping in the recruitment of participants for our scanning study.
Impact The collaboration has led to information on specific genotypes in our DS cohort. Our groups are also working together and with Dr Eric Karran of Alzheimer's Research UK to develop a proof of principle trial of a BACE inhibitor. Dr Karran is liaising with the pharmaceutical company. The project would be based on data obtained as part of this on-going study. The aim will be to test whether such an intervention alters the rate and age at which specific brain areas develop positive amyloid binding as detected using PET.
Start Year 2013
 
Description A yearly newsletter about our Down's syndrome dementia research 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact Each year we prepare a newsletter summarising the work we have undertaken as part of our research into DS and dementia. This goes to all participants, family members, paid carers and others interested in the research.
Year(s) Of Engagement Activity 2016
URL http://www.psychiatry.cam.ac.uk/ciddrg/winter-2016-newsletter-defeat-dementia-downs-syndrome-researc...
 
Description Ageing in people with Down's Syndrome 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Over 200 people attended from across the world many of whom were parents and families of people with Down's syndrome. This meeting was part of the celebrations of World DS day - Tony Holland was the speaker sponsored by the UK DS Association.

Difficult to assess but contacts were made with other national DS organisations
Year(s) Of Engagement Activity 2013
 
Description Dissemination of study findings and methodology at research conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact The prime purpose was to bring early career researchers together to present and discuss their research and to exchange ideas.
Year(s) Of Engagement Activity 2016
URL http://www.sindem4juniors.it
 
Description Down's Syndrome International health advisory group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Down's Syndrome international have set up an advisory group to develop best practice guidelines. I am working ion the mental health and ageing aspects.
Year(s) Of Engagement Activity 2015,2016
URL https://ds-int.org/
 
Description End of year newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact This newsletter was sent to all the contacts (such as the participants with Down's Syndrome, family members, social care providers, members of the DS Association, and any other contacts we have made during the course of the year. This is part of our PPI activity and ensuring that we feedback the findings from our study to all relevant people. In total over 300 copies of the newsletter were sent out.
Year(s) Of Engagement Activity 2015
 
Description Human amyloid imaging 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact This meeting brought together groups engaged in human amyloid research specifically those working on neurodegeneration. The aim was to exchange new ideas and present findings from neuroimaging studies and the use of new tau and amyloid ligands.
Year(s) Of Engagement Activity 2016
URL http://www.alzforum.org/print-series/570651
 
Description Investigating mitochondria in Down's syndrome 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact This is a related study to our main MRC funded study drawing upon similar participants. The poster was awarded a prize for one of the best posters

Increased interest in DS and ageing from a diverse acadmic and clinical audience.
Year(s) Of Engagement Activity 2013
 
Description Mental health and dementia Research Event 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact This was a research event organised by Cambridgeshire and Peterborough NHS Trust to showcase research that they are sponsors of to a wider audience.

Prime output was raising awareness about this very particular risk for developing Alzheimer's disease experienced by people with DS
Year(s) Of Engagement Activity 2014
URL http://www.cpft.nhs.uk/default.aspx.LocID-02700100p003.Lang-EN.emID-1255.rss-yes.EventID-24626.htm
 
Description Open day held at the Down's Syndrome Association HQ, Hampton Wick, to feedback the findings from our studies into Down's Syndrome and the link with Alzheimer's disease. This was following a successful earlier open day held in Cambridge. 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact This was a follow-up at the request of the Down's Syndrome Association to an earlier open day that had been held on World DS Day. It was at the DSA HQ and therefore more accessible than when it had been in Cambridge
Year(s) Of Engagement Activity 2015
 
Description Open day on World Down's Syndrome Day in collaboration with the Down's Syndrome Association 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact We arrange posters and demonstrations of the research we and others at the University of Cambridge have been undertaking into the relationship between Down's Syndrome and Alzheimer's Disease. The open day took place on World DS Day (21st March 2015) and was held at our research base and advertised regionally and nationally. We also arrange activities for people with DS.
Year(s) Of Engagement Activity 2015
URL http://www.downs-syndrome.org.uk/news/downs-syndrome-research-group-open-day/
 
Description Poster at the International Association for the Scientific Study of Intellectual Disabilities (IASSID) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Poster presentation. Well received with considerable interest. Some from the UK expressed a willingness to aid recruitment.

Potential for recruitment and also for establishing international collaborations
Year(s) Of Engagement Activity Pre-2006,2006,2009,2014
URL http://easpd.all2all.org/en/content/4th-iassid-europe-congress-pathways-inclusion-14-17-july-2014-vi...
 
Description Poster presentation at Society for Neuroscience conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Poster presentation of research findings

Sharing of ideas with colleagues undertaking related work
Year(s) Of Engagement Activity 2014
URL http://www.sfn.org/annual-meeting/neuroscience-2014
 
Description Preparation of a film called 'Together' about a specific research programme made at a open day 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact We commissioned a professionally made film about the involvement of people with Down's Syndrome in our programme of research on Down's syndrome and dementia. This was made at a open day held in 2016 to celebrate World DS Day.The film was launched at a showing at the Cambridge Arts Picturehouse in an event to celebrate World dementia week.
Year(s) Of Engagement Activity 2016
URL https://www.youtube.com/watch?v=pB7iqWUXQlM&feature=youtu.be
 
Description Presentation at EuroSciCon on Alzheimer's disease by a member of the research group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Presentation of the early findings from the MRC funded study on Down's syndrome. Also consider other work on mitochondrial function in DS. Discussion afterwards and findings reported in subsequent conference proceedings.

Interest for colleagues working in Alzheimer's disease research.
Year(s) Of Engagement Activity 2014
URL http://lifescienceevents.com/
 
Description Presentation by members of the research group at meeting on DS and dementia organised by the DS Association 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact This was largely to inform organisations who provide care to people with DS about the 'Defeat dementia in Down's Syndrome' campaign that is the umbrella term for a range of research projects.

Conference attended by about 100 people from different organisations.
Year(s) Of Engagement Activity 2014
 
Description Presentation to regional group of psychiatrists specialising in learning disability. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The two main purposes of the presentation was to feedback findings to colleagues some of whom had helped with recruitment and to also discuss the implications of the initial findings in terms of clinical practice and the potential for treatment development.

Some increase in inquiries about the study
Year(s) Of Engagement Activity 2014
 
Description Radio interview 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact One of the research assistants presented her experience undertaking a PhD on DS and dementia

Not known
Year(s) Of Engagement Activity 2013
 
Description School of Clinical Medicine Research day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This is a yearly event where junior researchers and PhD students present their work to the clinical academic community in Cambridge.

Raised awareness of this particular research project and how it links to research into dementia more generally.
Year(s) Of Engagement Activity 2014
URL http://www.gradschl.lifesci.cam.ac.uk/skills/events/annual/research_day
 
Description Understanding the link between Down syndrome and Alzheimer's disease: developing preventative treatments 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact This was an invited presentation for an international meeting held at the United Nations in New York to celebrate world Down's Syndrome day attended by representatives of national DS associations, members of the UN and and families of people with DS from across the world.

I have had inquiries from different countries about the research we are doing into ageing and seeking advice about service developments. Many were unaware of some of the age-related problems associated with DS.
Year(s) Of Engagement Activity 2014
URL http://www.worlddownsyndromeday.org/wdsd-conference
 
Description World Down's Syndrome Congress 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact One of the main aims of the meeting was to bring those researchers together in Europe who were working on DS and its link with Alzheimer's disease. The longer term aim was to establish research cohorts in Europe for future research and specifically treatments trials.
Year(s) Of Engagement Activity 2015
URL http://ww2.wdsc2015.com/?folio=7POYGN0G2