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Preface
As the chair of the Forum and workshop planning committee, I want to acknowledge the hard work and dedication shown by every member of the planning committee, the Forum and the workshop participants. I also want to thank the leadership of IOM and HHS for giving the Forum the opportunity to host this very important event. This workshop was a tremendous success, both in helping to identify potential scientific opportunities and in demonstrating the utility of moving from a public science education strategy to a more comprehensive public engagement with science where both parties - scientists and members of the public - listened and learned from each other.
Contents
PROCEEDINGS * 5
Introduction
What are the possibilities for public-private partnerships in the support and implementation of research. To assist in answering the mission statement, a list of scientific opportunities identified during the workshop was compiled in Appendix A. The following appendices include a copy of the workshop agenda (Appendix B), a list of workshop registrants (Appendix C), and biographies of forum members, the workshop planning committee, and workshop speakers (Appendix D).
Proceedings
April 18, 2007
So we are going to be quite ruthless in maintaining the organization of the workshop. In fact, we do not expect to reach a consensus by the end of the meeting. I can't discuss the perspectives of the advocacy community without mentioning the shortcomings of the CDC.
Autism—The Clinical Problem
What Do We Know? What Do We Need?”
There have been large twin studies to look at heritability regardless of the autism diagnosis itself. So what do we know about the extent of the problem in terms of mode. We know that some of the same mechanisms and pathways are affected in metabolic disorders as in
It is scary because of the sensitivity of the state and the sensitivity of the sampling treatment. However, one of the questions is how you look at placebo responders.
Lessons Learned from Other Disorders
Standards of Evidence”
Dr. Fernando Martinez
The clinical expression of asthma can begin at any age, but we have now found in the last 5, 10, 20 years that the first manifestation of the disease usually occurs in the preschool years. Unfortunately, we have not been able to demonstrate for any of the triggers that they are involved in the onset of the disease. CD14 is a crucial member of the receptor system for exposure and protection in the exceptional agricultural environments and also in the non-exceptional environments of Manchester.
One of the issues and challenges that we are facing right now is that although resources have been allocated to establish the cohort and to collect these samples, that funding will expire in the not too distant future. I don't think it's something that's going to be a fertile etiological factor for autism because it's simply shared by everything from ADHD to physical trauma to the brain. Autism is clearly one of the most important outcomes that we need to look at in the National Children's Study, and as Phil Landrigan pointed out, it will take us about 4 years to recruit the hundred thousand samples as these children get older—at 3 years age will have virtually all autistic children diagnosed and identified.
It is difficult to put completely new ideas into the collective brain of the research community. That's the other thing, not just one of the – or two, but replicate it. So I think that's another challenge, and in the National Children's Study, one of the things that I noticed that was not part of the RFP and not part of the protocol is something before 36 months of relationship to autism.
So there is no screening that happens at 12 months, 18 months, 24 months, which is part of the current protocol.
Environment and Biology I
What Are the Tools for Autism—What Do We Have, What Do We Need?
To discuss our work, I must introduce you to some of the cellular players in the CNS. Here, for example, we look at cell division in the corpus callosum after a clinical exposure to thimerosal. So what this says is that if cells learn during a critical period, learning in the same way that we learn language but at the cellular level, then when you make an input during that period, you change the fate of the cell, and it changes what it's going to do permanently.
If you overstimulate this cell and cause too many neurotransmitters to appear at the synapse, then the cell will become desensitized. There is a critical period that corresponds to the second trimester of brain development, as it would be in a human fetus. The redox status of the cysteine in the active site will activate or deactivate these enzymes.
A healthy brain must develop in the context of a healthy immune system and a healthy gut. Why is there such a neurobiological specificity to this in the kinds of things we talked about today, which were, for example, general changes in metabolism. What is described in the literature for iron deficiency in autism and in a variety of things that we've studied is that you have the distribution of interpeak distances that would be predicted by a lack of sufficient myelin.
I think the question was, if we're trying to understand how environmental factors affect fundamental biological processes, it's in the context of what are the fundamental neurobiological or other organ system processes that are disrupted. Slotkin: In the rats, in the same pattern that you saw in the autism brain, identical. I think the cancer literature is very rich in attempts to understand the role of environmental factors in disrupting basic biological processes.
New Approaches and Discussion with Workshop Attendees
April 19, 2007
One of the things for which it was characteristic is a wide variety of people sharing their views, but also listening carefully to each other. One of the things, being somewhat outside the field, that I'm struck by is how many research opportunities and how many research challenges there are. The bad news is that I believe we are far behind where we need to be, that there is a tremendous need to have a focused research agenda, but also from my perspective the resources needed to implement that research agenda as well.
I've been very impressed by the number of NIH Institute directors, the deputy director of the National Science Foundation, and a number of other people who have access to resources who have spent so much time with us, and I applaud that. Just to remind everyone of the ground rules, first the speakers, there's a little clock up here. The format of the discussions is that after the 15-minute lecture we will hopefully have 3 to 5 minutes for pressing questions from the speaker.
Again, we will prioritize people at the table, so if we have time it will open to the wider audience. So at the end of the day, we have reserved a significant amount of time for discussion by everyone in the room. Now let me introduce Henry Falk, who is chairing this first session on Environmental Epidemiology, using population-based studies to isolate the environmental causes of autism.
Falk is director of the Coordinating Center for Environmental Health and Injury Prevention at the CDC.
Environmental Epidemiology—Utilizing Population-Based Studies to Isolate the
Environmental Causes of Autism
Dr. Diana Schendel
The programs initiated include the Autism and Developmental Disabilities Monitoring or ADDM Network, the Centers for Autism and Developmental Disabilities Research and Epidemiology or CADDRE Network, and the "learn the signs, act early" campaign. The ADDM network goals are to establish a comparable population-based estimate of the prevalence of autism in various regions across the country, to describe the characteristics of children who have autism, and to examine these trends over time. I cannot describe the ADDM methodology to you this morning, but I would like to highlight some of its strengths.
All ADDM sites use a common case definition, and most sites may also use a uniform approach to case identification. As shown on the map, we have multiple locations across the country, and as a result, the population base of the ADDM network represents a very large portion of the United States population. At our peak, ADDM sites represented a population base of about 10 percent of 8-year-olds in the United States, and 8-year-olds are the target age group for our monitoring program.
And of course the ADDM network is meant to be ongoing to monitor the incidence over time. This may seem far from what is needed in an environmental epidemiology framework, but in fact the ADDM network provides a very fundamental role in giving us a much better understanding of the patterns of autism incidence as well as the patterns of incidence related to some very broad environmental factors, such as variation in geography or community and by sociodemographic factors. The ADDM data can also provide a very important understanding of the impact of certain methodological factors on the variation in the observed incidence that we see.
It is the prevalence of 8-year-olds in 2002, and the overall prevalence was 6.6 per thousand.
