Access to scientific information and support about sternal cleft: comparison of three sources
May 3rd, 2009 • General
As explained in Sternal cleft: repair or not repair? Mother’s questions to a scientist, I’m presently looking for scientific information and support to make an informed decision about the surgical intervention for aesthetical reasons of my 3 years old, Priel.
I’ve launched in parallel 4 methods for doing so:
- I’ve written, as I did almost 4 years ago, a post in English with a list of questions and a invitation for testimonies of parents and patients about their experience of (upper) sternal cleft. I have also, after reflection, posted two public photos of Priel. The majority of photos found online of upper sternal cleft come from medical archives and are not pleasant to see. In Priel’s case the cleft is very mild, it does look strange and every person who meet her remark either the gap on her chest or the way the air fills this gap when she breathes, but specially when she laughs or worse, cries.
- I’ve twittered about it, 3 persons retwitted and I received an concrete answer offering help from a doctor in Oregon:
- I’ve reposted my blog post in TwitterMoms: http://www.twittermoms.com/forum/topics/sternal-cleft-repair-or-not
- I’ve used the traditional search for information method via the Directory of Open Access Journals and the Custom Google Search in the Open Science Directory. The first, gave me 4 links to medical articles. The second, more than 100 links to medical articles, the majority of them in closed databases. Each single article will cost $25-$40. Cannot agree more with Open access and the price of knowledge. I still have to review these articles and cross fingers to find a literature review of upper or superior sternal cleft in a Open Access Journal. Dreams costs nothing!
These efforts will be completed by a post in French with questions addressed to the persons who contacted me during the last 3 years: two parents of toddlers with sternal cleft and a young woman whose sternal cleft was repaired in 1987. Let’s see which methods give the best results: self-search vs personal network?
Update 5 Mai 2009:
- No answer to my post in ‘the influential moms network’ Twitter Moms.
- Two persons retwitted: @NergizK and @Cristinacost, women and not of the egotwistical kind
- One doctor contacted me via Twitter and asked me for complementary information in a direct message
- I’ve surfed all the sources that came up using the Custom Google Search in the Open Science Directory: none is free access. However I found two excellent books of chest wall repair which text is partially accessible via Google Books.
- I’ve found two articles in free access via the Directory of Open Access Journals. I still have to read them.
- After preliminary readings on the subject, I contacted by mail Dr Alexander Fokin, who seems to be a worldwide expert in sternal cleft deformities and their repair, with my previous list of questions.
Fil des billets
