National Retinoblastoma Strategy

This may not be of interest to people just checking in on Gracie, but if you happen to be concerned about retinoblastoma this will be extremely nice to know. Canada is the first country in the world to have published a multi disciplinary, multi institutional guideline for care of retinoblastoma throughout the nation. Sorry, as a proud Canadian I couldn't resist bragging about that. It was published in this months Canadian Journal of Ophthalmology and it is absolutely EXCELLENT. It is useful because RB is such a rare cancer that most facilities really don't know how to treat it best and as such children are getting diagnosed much too late and are not receiving the best care available. By creating these standards for care it should help to inform ALL opthalmologists and hospitals of what they need to be doing to treat RB as well as clarifying what criteria indicate that a child really needs to be referred to a more specialized center. By doing this it makes it absolutely clear that there is absolutely no excuse for doctors/facilities with limited RB experience to try and treat patients whose cases are way above their heads just for prides sake, which yes really does happen. It's a very long read so I've only read about half of it so far but I'm really impressed with it. Apparently Kenya is also trying to make a similar national strategy for care. Hopefully the other countries in the world will realize the need for just such a publication. When caring for kids who already have so much to deal with the care needs to be focused on what is in the best interest for the child and not what will bring the most money into the hospital. More collaboration and less competition would be nice if these kids are really going to get the best care possible.

Here is a link to the document if anyone is interested in reading this. You'll definitely want to read it if you are affected by RB. http://article.pubs.nrc-cnrc.gc.ca/RPAS/rpv?hm=HInit&calyLang=eng&journal=cjo&volume=44&afpf=i09-194.pdf