Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Hello, Below is the Preliminary plan for the SCIA medical disease registry. We are in the final stages of receiving IRB medical approval for the SCIA medical disease registry. We are also building a computer system to manage the registry data electronically and we are working on the SCIA website in both english and spanish version among other things. Parents are welcomed to continue asking their MDs to order the SCIA lab tests. After all SCIA only want your children to get better so even though we won't be able to use your children's lab results until the registry is open it is ok, because there hundred of thousands of children in the USA alone with ASD. It is just that when the registry is open it will be much easier to get MDs to order the lab tests for your children. Preliminary plan for the SCIA medical disease registry 1. SCIA will make available all the documents and tools necessary for parents to approach their MDs and ask them to order the SCIA medical research lab tests. 2. SCIA will help doctors understand what medications have been used successfully to treat the most common pathogens (infectious agents) that could have contributed to the children's immune system dysfunction. We will help them understand what can be done to inhibit microglial activation and how to make sure that children are treated safely. 3. By SCIA receiving IRB medical approval for the autism medical disease registry, it will be easier for parents to convince doctors, because they will feel that this is an organized and safe effort. 4. SCIA will make sure that doctors know they are very important factor in this study and that their cooperation will change the lives of many children and their families. If you wonder what we mean by IRB approval please read the information below. Institutional Review Board http://en.wikipedia.org/wiki/Institutional_review_board An institutional review board (IRB), also known as an independent ethics committee (IEC) or ethical review board (ERB), is a committee that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the research subjects. In the United States, the Food and Drug Administration (FDA) and Department of Health and Human Services (specifically Office for Human Research Protections) regulations have empowered IRBs to approve, require modifications in planned research prior to approval, or disapprove research. An IRB performs critical oversight functions for research conducted on human subjects that are scientific, ethical, and regulatory. Regards, Stop Calling It Autism! http://www.stopcallingitautism.org Quote Link to comment Share on other sites More sharing options...
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