Sources of Support and Information

I have found the following websites of use...

About Research and Science

Behind the Headlines This is a wonderful site that explains and helps you understand the health stories that hit the headlines in the media. 

NIHR is creating a health research system in which the NHS supports outstanding people in world class facilities. 

This new partnership between the paper and the National Institute for health Research provides a forum for discussion along with information.

This urges everyone to get involved in improving current research and future treatment. 

James Lind Alliance - The JLA help with ‘research priority setting’ especially involving people affected by a condition or illness. See Priority Setting Guidebook

sense about science – Charitable trust that equips people to make sense of science and evidence on issues that matter to society.

About Getting Actively Involved

INVOLVE - provide information about public involvement in research with various guidance documents and advice.  

TwoCan Associates - produce excellent papers and information of user involvement in research. A route map (developed in conjunction with the Association of Medical Research Charities):

People in Research Joint initiative helping people to become actively involved in research, providing information about opportunities. 

North West People in Research Forum - This organisation is devoted to supporting PPI and public engagement (PE) in health research in the North West. The Shared Learning Group has a useful website, which has a lot of free resources about PPI.  Much of the information is transferable to involvement in research.

Involving London This website enables both patients and the public to find out how they can get involved in health and social care research in the City and for them to find out more about current opportunities and to share information and experiences. 

Involving People - This organisation in Wales believes that 'active' involvement of members of the public leads to research that is more relevant, more reliable and more likely to be used to improve health and social care services. 

Involving People in Research This Australian website has been developed to house resources such as the new Fact Sheet Series

UK Clinical Ethics Network 

The main purpose of this website is to provide information for UK clinical ethics committees

UK PubMed Central - This is a free online resource for biomedical researchers

Workshop in a Box - This is a wonderful new site from the Central Commissioning Facility - well worth a look

About Participation in a Clinical Study

UK Clinical Trials GatewayThis provides easy to understand information about clinical trials running in the UK. 

Your Treatment ChoicesProvides information and advice about Clinical Trials in your area.

About Using Social Media in Research

Research Information Centre has produced a good guide for using social media in research 

Using Twitter Guide - A London School of Economics blog


The Genetic Alliance is the national charity of patient organisations with a membership of over 130 charities supporting all those affected by genetic disorders. 

Association of Medical Research Charities - (AMRC) is a membership organisation of the leading medical and health research charities in the UK. 

Clinical Trials for Me a new site from AMRC and Genetics Alliance supported by Roche. See YouTube -

Orphanet - is a database of information on rare diseases.

Healthtalkonline - is the award-winning website of the DIPEx charity and replaces the website formerly at 

Eurodis – Rare Diseases Europe. Interesting charter and clinical trials glossary

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