Saturday, January 10, 2015

Behcet'sLive -- Take part in a unique video research program

PLEASE NOTE: Bedrock Healthcare in the UK is working on this research in conjunction with Celgene Corporation (makers of Otezla [apremilast], which is in clinical trials to treat BD). They need 8 people to participate from the US and 8 people from Turkey; at this point, they've gotten a good response from women and need to hear from more men.

From their recruitment website (

We would like you to consider taking part in an exciting project called Behcet’sLIVE that will look at how people with Behcet’s Disease and their families live with the condition on a day to day basis. Your experience will assist other people with Behcet’s Disease by helping healthcare professionals and providers of treatments to better understand their patients’ point of view.

Bedrock Healthcare, a UK based organisation, is running this unique research project. Bedrock Healthcare is a patient centric organisation with a history of running observational research programmes in various disease areas, both common such as diabetes, and rare such as haemophilia. They have developed their step-by-step methodology for patients to follow through experience and understanding gained from the previously conducted programmes. This makes taking part in the research not only simple, but interesting and extremely fulfilling for you.

We send you a video camera and easy to follow instructions on how to use it. All we need is about five minutes each day talking about what it is like for you having Behcet’s but we encourage you to film for longer if you wish. We will of course keep in touch with you to see how you are doing and offer any help you may need or answer any of your questions.

What you record may be used in different ways to help healthcare professionals (specialist doctors and nurses) and the sponsor company to improve care and services for people with Behcet’s disease. In your video diaries, we want you to tell us what you think is important – there is no script and no hidden agenda – what you say is totally up to you. There are, however, some aspects of your experience that we would like you to talk about and so we will include a few general topics and questions to guide you. 

We may also wish to share some of the footage with people who have Behcet’s Disease and their families via patient support resources, which may include websites or DVDs. If this is the case, we will contact you to make sure you agree for it to be used in this way. 

In addition, we would also like members of your family (who live with you and are over the age of 18) to give their views on the impact of your condition on your life and that of your family. We would also like you to tell us what you thought about taking part in the project and let us to ask you about anything you’ve said that we need to understand better.

After you have completed the filming period we will arrange a time to telephone you. This will give you the opportunity to tell us what you thought about taking part in the project and enable us to ask you about anything you’ve said that we need to understand better.

Please go to their website for more information: