This is one of the first projects that I was involved with from start to finish since my start in Berlin to be published, so I’m quite content with it. A cool landmark after a year in Berlin.
Together with TL and LN I supervised a student from the Netherlands (JH). This publication is the result of all the work JH did, together with the great medical knowledge from the rest of the team. About the research: Posterior reversible encephalopathy syndrome, or PRES, is a syndrome that can have stroke like symptoms, but in fact has got nothing to do with it. The syndrome was recognised as a separate entity only a couple of years ago, and this group of patients that we collected from the Charite is one of the largest collections in the world.
It is a syndrome characterised by edema (being either vasogenic or cytotoxic), suggesting there is something wrong with the fluid balance in the brain. A good way to learn more about the fluids in the brain is to take a look at the different things you can measure in the cerebrospinal fluid. The aim of this paper was therefore to see to what extend the edema, but also other patients characteristics, was associated with CSF parameters.
Our main conclusion is indeed the total amount of protein in the CSF is elevated in most PRES patients, and that severe edema grade was associated with more CSF. Remind yourself that this is basically a case series (with some follow up) but CSF is therefore measured during diagnosis and only in a selection of the patients. Selection bias is therefore likely to be affecting our results as well as the possibility of reverse causation. Next to that, research into “syndromes” is always complicated as they are a man-made concept. This problem we also encountered in the RATIO analyses about the antiphospholipid syndrome (Urbanus, Lancet Neurol 2009): a real syndrome diagnosis could not be given, as that requires two blood draws with 3 months time in between which is not possible in this case-control study. But still, there is a whole lot of stuff to learn about the syndromes in our clinical research projects.
I think this is also true for the PRES study: I think that our results show that it is justified to do a prospective and rigorous and standardised analyses of these patients with the dangerous syndrome. More knowledge on the causes and consequences is needed!
The paper can be cited as:
Neeb L, Hoekstra J, Endres M, Siegerink B, Siebert E, Liman TG. Spectrum of cerebral spinal fluid findings in patients with posterior reversible encephalopathy syndrome. J Neurol; 2015; (e-pub) and can be found on pubmed or on my mendeley profile
As said, I spoke at the “Gezondheidszorg in Vogelvlucht” symposium, organised by the Leidse Co-raad for all students doing their clinical rotations on the topic of the role of the pharmaceutical industry in medicine.
Previously I told you that I wondered what kind of presentation it would be. During the preparation the story became clear to me… there is no way to choose between good or bad… they are both. How come? There are some serious problems in the way medicine is organised how it comes to new decisions on treatments. Missing data from trials indeed hamper the way doctors can decide what treatment to give and which not. So, I did talk about the book Bad Pharma and our Bad Pharma Symposium. But this was not all. Science has taken a beating lately, for example in the Economist article from October. And while preparing this talk I learned that Science and pharmaceutcal companies can learn a lot from each other.
During the presentation I used two books: Bad Pharma, which can be bought everywhere, or borrowed from the Walaeus Library of the LUMC, and Arrowsmith,a great coming of age novel by Sinclair Lewis, about a young scientist doctor who is struggling with the questions young doctors/scientist all encounter. I will write a longer post on that novel somewhat later, but in the mean time you can download the free e-book here.
I will speak at the “Gezondheidszorg in Vogelvlucht” symposium, organised by the Leidse Co-raad for all students doing their clinical rotations on the topic of the role of the pharmaceutical industry in medicine. Although I do not have any experience with working with commercial partners, I do have an opinion on such collaborations. The stories that were published before on this website might give you a hint: The Diane-35 story (part 1, 2 and 3) and the “Bad Pharma” the book by Ben Goldacre.
However, in the preparation of the course that started today I keep on wondering whether it’s all that bad. I guess it’s not. Sure, there is a lot to change in the way new medications find their way to their patients. Also, I believe that at some level commercial interest should not be the driving force of medicine. But there are lessons to learn from pharmaceutical companies: their R&D departments are highly effective and come up with great stuff. Also, companies like these have adopted strict protocols which might be used as a template to order the flow of data in academia to minimise sloppy science! These thoughts will keep me busy for the next couple of days while i prepare for my talk. To be continued!
During “conference season” I visited several conferences: ISTH, eurostroke, WEON, NVTH, UK-CIM and the ERA-EDTA. During all conferences I got the opportunity to present my own research, except for during the ERA-EDTA. For this conference I was asked to teach in a CME course on how to perform and interpret a clinical research project. The program:
– Setting up your study: study questions and study designs Vianda Stel, Amsterdam, the Netherlands
– Threats to validity of study findings: bias and confounding Kitty Jager, Amsterdam, the Netherlands
– Prognosis vs aetiology Friedo Dekker, Leiden, the Netherlands
– Interpretation and presentation of study results Bob Siegerink, Leiden, the Netherlands
Since this is a conference on kidney diseases, the examples that I use are from that field. Although not necessarily my field, I believe that the talk can be of interest for anybody who is at the start of their research career. Please click the picture below to see the talk (slides + audio)