|Colin the Caiman|
I received an email from Dr Tobin at the Mayo Clinic recently to update me on their CLIPPERS Respository project. This is a systematic approach to CLIPPERS research which involves gathering as much information about patients as possible in one place to enable detailed research. If you have a diagnosis of CLIPPERS and want to take part, you can read more on the CLIPPERS Repository page.
Anyway, they are currently focussing on patients who had tissue samples available and they have 12 enrolled to date which they are very pleased with. This data is enabling them to take a more comprehensive look at the common features of the condition across different people with less doubt about the possibilities of other diseases being present. There should be some more news about this in the near future.
They are also still very much interested in recruiting people with a CLIPPERS diagnosis but who didn't have tissue samples taken. These people (like me) are still a valuable resource and will form a larger cohort which can be used in the next phase of the research. I have signed up and will update you about the process when I get my enrolment kit.
Apparently, some other laboratories are talking to the Mayo about the possibility of performing different analyses on some of the samples. I think this is particularly exciting as it means there may be a competitive element which will help drive the research. I am hopeful that with this kind of approach some progress can be made in finding out more about what CLIPPERS really is, and how to best treat it.
Read other articles in this series at Living With CLIPPERS.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.