Taking part in research

In February 2010, I posted a blog called Clinical Trials. This post is building on that one because I just wanted to tell you about some updates.

Firstly, the EU Clinical Trials Register website is now open to the public, and allows you to search for information on clinical trials in European Union (EU) member states and the European Economic Area (EEA) and clinical trials which are conducted outside the EU/EEA if they form part of a paediatric plan. This means that you can keep up with details of the latest treatments available, and possibly even become involved.

Also, if you are interested in taking part in research, take a look at researchmatch, which is a registry of volunteers who are interested in taking part in research.

If you decide that you are interested in taking part in a clinical trial, please do look at the previous post,  and do speak to your doctor or other health professional and your family. There are often risks involved and it is vital that you are fully informed.

Meet e-Patient Dave

TED is a nonprofit devoted to Ideas Worth Spreading. It started out (in 1984) as a conference bringing together people from three worlds: Technology, Entertainment, Design. Since then its scope has become ever broader. TED talks are short, inspirational videos, and one of their latest ones is called "Meet e-Patient Dave" and it is delivered by Dave deBronkart and it is truly fantastic. It is very moving, because Dave describes his battle with cancer but focuses on the need to involve patients in the decision-making process regarding their treatment regime. Dave talked about some brilliant resources to support patients, including

• Association of Cancer Online Resources - which provides resources and forums for people with cancer and related disorders
• Visible Body - a 3D atlas of the human body 
• Google Body - another 3D atlas of the human body

  

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1492155/pdf/jgi_30261.pdf