The Documenting Hope Project involves several important research studies:
CHIRPTM Study: Child Health Inventory for Resilience and Prevention
The purpose of this research study is to systematically gather information about the association of the accumulation of many stressors and exposures with pediatric chronic disease. The Documenting Hope Project is based upon the underlying model that environmental and lifestyle factors work synergistically and build up cumulatively to impact health, both positively and negatively. Based on this model, we plan to use this information to test a series of scientific hypotheses: 1) The more stressors, the worse the health outcomes; 2) As we reduce and remove stressors, we will see an improvement in health; 3) When this is done skillfully and comprehensively enough, chronic illness diagnoses may be overcome.
Our “cumulative impact” model has been used in both environmental and health-related investigations. Our use of this approach distinguishes it from most other studies of lifestyle and environmental influences on pediatric chronic disease because we look at stressors comprehensively, whereas the majority of studies to date have considered only one or a few influences.
It is not possible to develop a picture of cumulative impact from aggregating associations by patching together a series of separately conducted, more narrowly focused studies each with a different cohort and context. Therefore, we have prepared a comprehensive survey of symptoms and stressors during the prenatal, pregnancy and pediatric periods. This will allow us to see both the number and the interactions of these stressors in relation to the chronic disease diagnoses that over half of our children have today, and the chronic illness symptoms that are even more pervasive. This CHIRPTM study is both unprecedented and highly timely.
The survey will be administered online, and will be completed by the parent or guardian of the child. Enrollment for this study begins in 2018. Please check back for information on how you can participate.
Documenting Hope’s Prospective Multivariate Longitudinal Observational Registry
The Documenting Hope Prospective Intensive Multivariate Longitudinal Observational Study will build upon the CHIRPTM Registry as a foundation for capturing clinical data over time to test the hypothesis that comprehensive personalized lifestyle interventions will a) reduce the number and severity of stressors, b) improve health, and c) lead to symptom abatement. This study explores how a data-driven assessment of environmental and lifestyle factors coupled with individualized lifestyle modifications can result in improved health outcomes and even total disease reversal. There is a vast body of anecdotal evidence indicating that individuals with chronic conditions can fully recover, but almost no prospective research documents this. We wish to approach this question rigorously and scientifically, tracking individual participants through 18 months of lifestyle interventions personalized to their needs. We wish to document the activities that occur, track outcomes using carefully chosen measures, and look at changes in underlying measures of health as children go through this process. Just as our CHIRPTM study looks at stressors comprehensively, this study will look intensively at the impact of health-supporting activities.
By conducting this prospective investigation, The Documenting Hope Project seeks to test and explore, through proper and rigorous scientific methodology, the underpinnings of symptom mitigation and abatement. The roles of Documenting Hope will include sponsoring costs of care and assessment, and providing infrastructure and coordination services to support communication amongst clinicians. The clinicians will be independent of Documenting Hope and will choose interventions based upon their own clinical judgement and team discussions. The overall process will allow 14 children to participate in this project, receiving individualized care and both standardized and individualized assessments. More specifically, this involves the following:
- Systematic assessment of stressors, exposures and risk factors using our CHIRPTM survey
- Detailed high-quality tests and assessments to track change over time in multiple levels of function, carefully chosen and timed to minimize burden on the child and family
- Supervision of care by a primary clinician along with input from a team of experts, including a family health coach and clinical care coordinator
- Comprehensive approach that considers genetic, environmental, and epigenetic factors that underlie symptoms
- Oversight by medical mentors, scientific and clinical experts with long-cultivated breadth and depth of experience relevant to mitigation, abatement and resolution of illness
- Green, highest quality, non-toxic, hypo-allergenic products and complete diet and nutritional support
- Assessment at regular intervals along with ongoing sensitive care and personalized support