ACCELERATE: A Patient-Powered Natural History Study Design Enabling Clinical and Therapeutic Discoveries in a Rare Disorder.

Geographically dispersed patients, inconsistent treatment tracking, and limited infrastructure slow research for many orphan diseases. We assess the feasibility of a patient-powered study design to overcome these challenges for Castleman disease, a rare hematologic disorder. Here, we report initial results from the ACCELERATE natural history registry. ACCELERATE includes a traditional physician-reported arm and a patient-powered arm, which enables patients to directly contribute medical data and biospecimens. This study design enables successful enrollment, with the 5-year minimum enrollment goal being met in 2 years. A median of 683 clinical, laboratory, and imaging data elements are captured per patient in the patient-powered arm compared with 37 in the physician-reported arm. These data reveal subgrouping characteristics, identify off-label treatments, support treatment guidelines, and are used in 17 clinical and translational studies. This feasibility study demonstrates that the direct-to-patient design is effective for collecting natural history data and biospecimens, tracking therapies, and providing critical research infrastructure.

Taking care of the researcher -a nature and art-related activity retreat: Sharing natural space puts humanity into perspective.

BACKGROUND: There has been an insufficient amount of studies that examine how academic working life of researchers can be supported. OBJECTIVE: We examine the use of a nature and art-related activity retreat designed for researchers. The purpose was to evaluate if and how researchers perceived different workshop experiences set in nature as meaningful and important with regards to their self-care. METHODS: A mixed group of six researchers from Sweden, Finland, and the United States met for a three-day retreat consisting of self-selected nature and art-related activities. From data constituted from participant reflections, a focus group interview, a three months follow-up questionnaire, and an analysis of the workshops undertaken, three major themes were identified: "Sharing and connection", "Embodiment" and "Nature". RESULTS: Analysis of the workshop-style exercises did not show significant variance in reported meaningfulness and usefulness related to the activity itself. However, there was a strong correlation between perceived value and shared experience where the sharing of the natural space was felt to put humanity into perspective. CONCLUSION: Organizing and systematizing health preventive retreats for researchers in academia may be an important part of the sustainabile academic community in which the researcher needs to be better taken care of in a more embodied way. Although this study was conducted prior to COVID-19, such retreats and potentially also online versions, could be useful for managing the pandemic and afterwards, in our new "normal".

Bridging the divide between genomic science and indigenous peoples.

The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of particularly biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data, and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. Some argue that the history of poor scientific practice justifies refusal to join genomic research projects. Others argue that disease poses such great threats to the well-being of people in indigenous communities and developing nations that not participating in genomic research risks irrevocable harm. Thus, some communities particularly among indigenous peoples have declined to participate as subjects in genomic research. At the same time, some communities have begun developing new guidelines, procedures, and practices for engaging with the scientific community that offer opportunities to bridge the gap between genomic science and indigenous and/or developing communities. Four new approaches warrant special attention and further support: consulting with local communities; negotiating the complexities of consent; training members of local communities in science and health care; and training scientists to work with indigenous communities. Implicit is a new definition of "rigorous scientific research," one that includes both community development and scientific progress as legitimate objectives of genomic research. Innovative translational research is needed to develop practical, mutually acceptable methods for crossing the divide between genomic researchers and indigenous communities. This may mean the difference between success and failure in genomic science, and in improving health for all peoples.

Depression among a sample of first-time adolescent and adult mothers.

PROBLEM: Little is known about the rates, correlates, and consequences of depression among a sample of first-time mothers. METHODS: Four-site prospective study of the first 3 years of life among first children born to first-time mothers, including adolescent (N= 396), lower- (N= 169), and higher-resource adult (N= 117). Mothers were administered the Beck Depression Inventory prenatally and 6 months postpartum. Measures of maternal and infant behaviors were taken at 8 months. FINDINGS: Adolescent mothers displayed higher prenatal and 6-month rates of depression than lower- and higher-resource adult mothers, with significantly more adolescent mothers "consistently" depressed at the two time points than lower- and higher-resource adult mothers. Further, adolescent mothers were significantly more likely to become depressed after their babies were born than lower- or higher-resource adult mothers. Depression was negatively related to parenting practices and babies' behavior. As depression increased, mothers scored less favorably in maternal warmth and sensitivity, contingent responsiveness, and general verbalness; children scored less favorably in warmth seeking toward their mothers. CONCLUSION: Findings signify the need for counseling and nurse-based intervention and prevention services geared at preparing pregnant adolescents for motherhood.