While many children do recover from serious chronic environmental illness, these stories of remission are rarely documented in the scientific literature. Medical science has much to learn about the mechanisms that contribute to environmental illness as well as the tools that can be used to reverse it. The Documenting Hope Project is poised to rigorously document an integrative model of care, to disseminate findings to a wide public audience and ultimately to encourage the growth of the responsive community-based science so urgently needed in this time of epidemic chronic illness.
Lead by Principal Investigator, Martha Herbert PhD, MD, Documenting Hope is conducting an observational assessment of children in recovery from chronic illness. In contrast to a traditional clinical study which observes one thing at a time, an observational assessment allows scientists to observe a multiplicity of variables in a given study environment.
Traditional clinical trials have largely not been successful in helping us to understand the root causes of complex systemic disease or complex epidemiological processes. Many scientists now believe that the complexity of modern illness requires a more complex study design, one that leaves room for multiple, simultaneous factors in explorations of causation, and by extension in prevention and reversal. We believe that solutions to complex illness will continue to elude us until we learn to ask our questions differently.
We are committed to understanding and helping to reverse the epidemics of chronic illness that are impacting so many of our nation’s children. We believe that an observational assessment and case registry are the best way to do this. In specific terms, the Documenting Hope observational assessment and case registry will involve:
- The collection of comprehensive metabalomic, microbiomic, genomic and epigenetic information on each of the children before they start the program, and at determined points throughout the eighteen-month healing and recovery journey.
- The use of additional cutting-edge research tools including brain imaging, gut microbiome profiling, and gene expression studies that enable a nuanced and measurable look at how biology changes as health improves.
- Participating families will input daily lifestyle data [stooling, food consumed, behaviors, sleep data, observed symptoms, or symptom remission]
- The use of a sophisticated and interactive bioinformatics platform that will enable efficient and accurate analysis of the data collected on the participants
- The crowd-sourcing of successful approaches to restoring health; since the electronic health record enables both patients and clinicians to enter data and to collaborate, and where the intensive data collection for The Documenting Hope Project will be tracked, the film will be poised to serve as a platform to enrolling more people in this research, and to extending successful protocols to members of the general public in a process of community based participatory science.