Join Dementia Research service taking off in the Eastern region

On International Clinical Trials Day (20 May), dementia researchers are celebrating a surge of public support with over 6,000 members of the public signing up to Join Dementia Research to register their interest in volunteering for dementia research studies. The online and telephone service, which launched nationally in February, is already recruiting volunteers into research studies but those responsible for its development are urging more people to consider signing up.

Join Dementia Research (www.joindementiaresearch.nihr.ac.uk) was funded by the Department of Health and delivered by the National Institute of Health Research in partnership with Alzheimer's Research UK, Alzheimer's Society and Alzheimer Scotland. The initiative, the first of its kind in the UK, aims to provide the opportunity for those with dementia and their friends and family to get involved in pioneering research, as well as streamlining the recruitment process for researchers. By signing up, volunteers agree to be contacted to take part in new studies getting underway in their area, from which point they can decide if they wish to take part.

The scheme was launched nationally in February, with a surge of registrations in the last three months. There are now 39 different studies looking for volunteers through Join Dementia Research, and over 1,000 members of the public have already been enrolled into research. Locally, registrations saw a 200% increase following the campaign, with the service already successfully connecting patients to dementia trials in the eastern region.

Professor John O’Brien, Professor of Old Age Psychiatry at the University of Cambridge and National DeNDRoN Specialty lead for Dementia said:

“Join Dementia Research is a great innovation, allowing people with and without dementia to register their interest in studies to help the global effort to tackle this devastating disease. No new treatments for dementia have been licensed for over a decade, and we also need to find out more about how to recognise and diagnose people early so that we can do the best research possible to find better treatments”.

“Within only a few months Join Dementia Research has shown its value and allowed over 1000 participants to take part in dementia studies. I would encourage all people with dementia or memory problems to consider volunteering to register with Join Dementia Research today, we really need your help”.

Join Dementia Research allows anyone with and without memory problems to sign-up using basic demographic and health information and be matched to studies in their area. Research teams whose studies are recruiting using Join Dementia Research can then approach them about their particular study and the volunteer can decide whether to take part on a case-by-case basis.

It’s also possible for someone to register on behalf of someone who may not be able to register themselves, acting as a representative. This allows people to sign up those who may need assistance using the system or may have dementia themselves and benefit from a helping hand.

Chris Carling, a Dementia Research Champion for the Eastern region, supported her parents when they developed dementia of different kinds at the same time, and has been helping to spread the word about Join Dementia Research. She said: “With over 1000 people already recruited to dementia research studies Join Dementia Research is proving itself a really good service. In promoting the scheme in the Eastern region I have found people extremely interested and ready to help beat dementia by registering their willingness to take part in research.”

People are being asked to sign up online at www.joindementiaresearch.nihr.ac.uk or contact one of the charity helplines: Alzheimer Scotland (0808 808 3000), Alzheimer’s Research UK (0300 111 5 111) or Alzheimer’s Society (0300 222 1122).

Ends

For further information, and film and interview opportunities, contact:
Laura Phipps, Press Office (Alzheimer’s Research UK): 0300 111 5 666 mobile: 07500803936
Esther Reeve, Communications and Media Officer (NIHR CRN Eastern): Telephone 01603 289943 Email esther.reeve@nnuh.nhs.uk

Notes to Editors

Facts about dementia
• Dementia is used to describe a group of symptoms including memory loss, confusion, mood changes and difficulty with day-to-day tasks.
• Every 3.2 minutes someone in the UK develops dementia, and the number of people affected is predicted to double in the next 30 years.
• Dementia is caused by brain diseases, with Alzheimer’s disease accounting for around two thirds of cases.
• One person will develop dementia every three minutes.
• Dementia costs the UK over £26 billion a year.
• There is no cure for Alzheimer's disease. Delaying the onset of dementia by five years would cut by a third the number of people affected by dementia.
About the NIHR
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research.
Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has:
• increased the volume of applied health research for the benefit of patients and the public
• driven faster translation of basic science discoveries into tangible benefits for patients and the economy
• developed and supported the people who conduct and contribute to applied health research.

The NIHR Clinical Research Network is the clinical research delivery arm of the NHS. We operate nationally across England through a national coordinating centre and 15 local branches delivering research in the NHS across all disease areas.

The NIHR Clinical Research Network: Eastern is hosted by Norfolk and Norwich University Hospitals NHS Foundation Trust. The host is responsible for ensuring the effective delivery of research in the Trusts, primary care organisations and other qualified NHS providers throughout the Eastern area.

About Alzheimer’s Research UK
Source: http://www.alzheimersresearchuk.org/
Alzheimer’s Research UK is the UK’s leading dementia research charity specialising in finding preventions, causes, treatments and a cure for dementia. For more information about dementia research, contact the Dementia Research Infoline on 0300 111 5 111.

About Alzheimer’s Society
Source: http://www.alzheimers.org.uk/
Alzheimer's Society supports people to live well with dementia today and funds research to find a cure for tomorrow. We rely on voluntary donations to continue our vital work. You can donate now by calling 0845 306 0898 or visiting alzheimers.org.uk

About Alzheimer Scotland
Source: http://www.alzscot.org/
Alzheimer Scotland helps people with dementia, their carers and families. Our members include carers, relatives, people with dementia, professionals, groups and organisations.