| Just wanted to add my perspective as a US medical student-- First I would like to say that I'm sorry for your loss, and please don't take my comment as defending or justifying our current research system. But the explanation as to why there is so little medical research for children has to do in part with the federal laws regarding Protection of Human Research Participants (PHRP), specifically the "vulnerable populations" subsections, which define additional protections that are required to perform research on such groups (for children, it is Subpart D). I won't go into detail, but the gist is that we err far on the side of caution. Whether that's for the best is another matter. There's a huge amount of red tape/obstacles for performing clinical trials on competent adults, and much more if your study includes children or other "vulnerable populations". There is a whole list of exclusion criteria that you have to get past before your study can be approved and you can start seeking funding (some of which may be difficult to prove or justify to the IRB), you need parental permission and the child's assent (which also may be difficult to prove, and doubles your chances of losing a subject), risk assessment and the associate requirements/protections are handled differently, and so on. Here are some resources if you want more details: http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html#... http://grants.nih.gov/grants/guide/notice-files/not98-024.ht... |