Monday, 14 April 2014

The CLIPPERS Repository

Spring at Last!
I am really pleased and excited to be able to tell you about a new initiative from the Mayo Clinic to start systematically collecting samples (blood/tissue) and records of CLIPPERS patients from around the world. The idea is that by looking in detail at as many cases as possible there is more chance of finding out about what triggers or causes CLIPPERS. Eventually this could lead to simpler diagnosis and more effective treatment. If you are interested in participating you can find out some more about the project on this new blog page, including contact details for Dr Tobin, the lead investigator.

Read other articles in this series at Living With CLIPPERS.

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Thursday, 20 March 2014

CLIPPERS: where are we now?


http://onlinelibrary.wiley.com/doi/10.1111/cei.12204/abstract
A new article has been published which attempts a comprehensive review of CLIPPERS as it stands in 2013/2014. It is written for medics, but I thought gave a really good general summary of the condition, the research studies, the diagnosis, the treatments and the "still to do". I think it should prove particularly useful for doctors new to the condition. As far as I can tell it is freely available by following the above link, but if that doesn't work for any reason, you could try emailing Dr Dudesek and asking for a "preprint".

Read other articles in this series at Living With CLIPPERS.

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Friday, 7 March 2014


One of the more interesting aspects of research is when scientists have discussions in public via the letters pages of scientific journals. One such letter has appeared in response to a short paper which I discussed briefly last year. Essentially, in the original paper, the authors examined a CLIPPERS patient using some different types of MR image acquired on a modern scanner with a stronger magnetic field than in some previous studies ("3T").

In this letter ("CLIPPERS and its related disorders, relevance of brain 3.0 T MR"), Dr Taieb and his colleagues suggest that although some of the observed differences seen could be due to the stronger magnetic field and different types of images, they may still not be sufficient to distinguish CLIPPERS from two competing conditions (primary angitis of the CNS and B-cell CNS Lymphoma). They very sensibly suggest that more work needs to be done to confirm the original observations in more patients. Also they stress the need to compare the appearance of the MR images directly with that of tissue samples, so that a detailed understanding of how the tissue is affecting the MRI can be obtained.

Read other articles in this series at Living With CLIPPERS.

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Saturday, 22 February 2014

Rare Disease Day is Nearly Here

Friday 28th February 2014
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. So CLIPPERS is definitely rare on both counts and probably rare even for an officially rare disease. The hope is that by considering the relationships between rare conditions and more common ones, greater progress can be made in diagnosis, treatment and patient care.
 
 

Read other articles in this series at Living With CLIPPERS.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.