Hi did anyone attend the recent meeting in cardiff 30 th january cllsa, was unable to attend just wondering , how it went , was it well ...

[stewie]

attended , was there any interesting discussions or any new information was shared . The meeting are usually well attended and well organised ,

[stewie]

HI Hairbear sorry just noticed your post after posting my question , thanks

[Myrddin]

Meeting was well attended. Presentations were positive and very informative. We now have something worth watching and waiting for. With many new treatment options being tested

Thanks to Chris Fegan and Chris Pepper for their time and to the others who presented their work. Good to know so much work is going on to understand CLL with the support of The various funding bodies needed to keep research going.

Plenty of good food available supplied by cllsa. Was well worth the effort to attend. Unfortunately Julia had to cry off last minute so we will have to wait to hear how we'll her work is progressing with the help of those who have filled in the questionaire and those who have signed up to be involved in her project. With about 8400 a year being diagnosed we need to find good ways to support them through knowledge of the journey we are all on and especially watch and wait

[Quarry]

I am recently diagnosed. How do you sign up to Julia's project?

Andy

[Newdawn Administrator]

Andy, try this link for Julia's project.

surveymonkey.com/s/inourblood

Newdawn

[HAIRBEAR_UK Founder Admin]

Hi Quarry, this is Julia’s recent update/hand-out

This hand-out provides some basic information about the work I am undertaking, and provides links to sites where you can find out more if you are interested. It also gives you the links to the survey and consent forms supporting the project.

As some of you here already know, I am currently undertaking my doctoral project with University of the Arts London/Falmouth University looking at the way people with CLL use the internet to gain knowledge and support. I have a blog explaining my research here:

julesk-inourblood.blogspot....

Please take a look, and feel free to post comments on the blog at any time.

The project is completely independent, with no commercial interests or financial support, although it does have the in principle support and backing of the CLLSA UK.

I am looking for different levels of participation, and am delighted with the many offers of support, help, and participation I've had so far.

Some people are happy to consent to my using selected excerpts of their online postings. If you have a dedicated CLL blog, Facebook page, website, YouTube channel, or simply post regularly to a support site and would be happy to consent to me using selected excerpts from any of these in my work, the details and consent form for that are available here surveymonkey.com/s/inourblo...

Others have expressed a preference to answer questions, or write about their experiences directly. With that in mind I have now designed a survey about living with CLL and internet use which you can access and submit from this link: surveymonkey.com/s/inourblood. There is of course nothing to stop you contributing to both elements of the research should you wish.

The responses to the survey are completely anonymous (unless you state otherwise on the form) and are transmitted over a secure, encrypted connection. IP addresses are not stored following transmission of the documents, and results can only be accessed by me. The survey will take you a minimum of 15 minutes, although you can spend much longer on it depending on how much you want to write about your experiences. You can save it and come back to it before submitting if you don't have time to do it in one go.

Participation is entirely voluntary - I will not use any postings about CLL from any sites without any individual's informed consent. The project has been through a rigorous ethics committee, and has been approved for human subject research by both awarding Universities.

The CLL online network is a particularly vibrant, well-informed, and supportive global community, yet it remains under-researched. Consequently, much of what could be learned from it about the realities of living with chronic blood cancers stays hidden from the outside world.

With your help, I'd like to do something to change that, and hopefully improve understanding and provision of care for this user group in the future.

.

[HAIRBEAR_UK Founder Admin]

Hi Stewie and All. the Cardiff meeting was well attended.

It was great tp spend time with others in the same boat at Cardiff. It was also a welcome relief to see the snow thaw and rains subside,, the sun shone (I had forgotten what it looked like). I hope those travelling home had a trouble free journey..

Julia is very disappointed she was unable to present her study at this meeting and has confirmed that she will present and update her progress at a meeting when she is able I am sure you will join me and wish her recovery soon...

The time allocated for her talk at the meeting was substituted with peer group discussions. on topics for carers, W&W , treatment and research. These were supported by Prof Fegan and Dr Pepper. (their discussion groups were well subscribed).

Feedback about the day was generally good and it was encouraging to hear a UK expert perspective of the changing face of CLL medicine and learn the different avenues of approach to novel treatment and testing that is coming off the bench and into trial.

The scientist's afternoon CLL talks were also enjoyed by many CLL patients. It was both fascinating and reassuring to see so much dedication and so many great minds focused on finding a solution to our plight.

Thank you Cardiff CLL for hosting the event and taking time out of a very busy schedule to present your talks and support us in discussion..

Best wishes

Nick

[Quarry]

HairBear/Nick and Newdawn - thanks for links/info to project. Survey was interesting and make me think!