To determine the barriers that prevent people from volunteering for medical research studies several questions need to be answered. The methods of advising people of studies for which they qualify need to be examined annually. The methods of reducing perceived risks for volunteering to participate in research should be examined. Successful methods of recruitment across the medical community need to be evaluated and... more »
Each of Us is Unique, All of Us should work together. Some diseases are generously funded because advocacy groups have powerful lobbying arms. Every individual affected could potentially contribute valuable data to different medical subspecialities. We should not box people in ICD codes, but use a narrative-based approach, stop dismissing patients' observations and patterns of limited significance - as it could lead to... more »
This would be a mixed methods study. The qualitative section would involve interviews to ascertain gaps in in chronic kidney disease communication (likely risk assessment in CKD progression, information about dialysis options, mental health, advance care planning). This would be followed by surveys of patient-reported measures of communication, such as CAT (Communication Assessment Tool; https://www.ncbi.nlm.nih.gov/pubmed/17574367).... more »
Use a case-cohort study, identifying cases through the EHS system and confirming through a variety of clinical laboratory tests. We know little about the genetic basis of T1D in African-ancestry (non-white) populations or T1D with onset in adulthood, These data would also provide insights on the rates and types of complications that may differ between adult-onset T1D and childhood-onset T1D.
The proposed study would identify microbial communities and metabolic profiles associated with stigmatized conditions such as idiopathic malodor or mental health. Working with systemic malodor/PATM community provides unprecedented opportunities to explore biomarkers of depression, social stress, diabetes, inflammatory diseases, dental, cardiovascular, and digestive health, exposure to antibiotics, lifestyle & dietary... more »
Research on populations underserved in biomedical research (UBR) is often based on single UBR characteristics or combined age-race-ethnicity-sex groupings. However there are population subgroups with particularly concerning constellations of UBR characteristics and very poor health status (e.g., persons without health insurance who live in rural Appalachia). All of Us can provide a more complete picture of the extent,... more »