Gait, balance, and cognitive impairment make travel cumbersome for People with Parkinson’s disease (PwPD). About 75% of PwPD cared for at the University of Arkansas for Medical Sciences’ Movement Disorders Clinic reside in medically underserved areas (MUAs). Validated remote evaluations could help improve their access to care. Our goal was to explore the feasibility of telemedicine research visits for the evaluation of multi-modal function in PwPD in a rural state.

In-home telemedicine research visits were performed in PwPD. Motor and non-motor disease features were evaluated and quantified by trained personnel, digital survey instruments for self-assessments, digital voice recordings, and scanned and digitized Archimedes spiral drawings. Participant’s MUA residence was determined after evaluations were completed.

Twenty of the fifty PwPD enrolled resided in MUAs. The groups were well matched for disease duration, modified motor UPDRS, and Montreal Cognitive assessment scores but MUA participants were younger. Ninety-two percent were satisfied with their visit, and 61% were more likely to participate in future telemedicine research. MUA participants traveled longer distances, with higher travel costs, lower income, and education level. While 50% of MUA participants reported self-reliance for in-person visits, 85% reported self-reliance for the telemedicine visit. We rated audio-video quality highly in approximately 60% of visits in both groups. There was good correlation with prior in-person research assessments in a subset of participants.

In-home research visits for PwPD in MUAs are feasible and could help improve access to care and research participation in these traditionally underrepresented populations.

Electronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation.

This second pilot study involved families enrolled in a large EI program (n=1040 families) in concert with their implementation of a statewide quality improvement initiative for care plan development and outcomes reporting. A total of 22 EI service coordinators and supervisors were engaged in 3 phases: initial e-PRO intervention, peer-mentor enhancement, and standard recruitment protocol.

Implementation of the e-PRO intervention and peer-mentoring enhancement yielded low enrollment rates over the first 6 months (n=17). A standard recruitment protocol has resulted in enrollment growth (n=83) towards the targeted enrollment rate (n=832).

This study reports on early insights for building and sustaining a productive academic-community partnership for e-PRO implementation to support family-centered coordinated care. Lessons learned from this academic-community partnership with respect to strategies for enhancing community significance, collaboration, return, and control are discussed as they inform further development of this intervention before scale-up.

Social media is increasingly being used in research, including recruitment.

For the Bayley Short Form Formative Study, which was conducted under the the National Children’s Study, traditional methods of recruitment proved to be ineffective. Therefore, digital media were identified as potential channels for recruitment.

Results included successful recruitment of over 1800 infant and toddler participants to the Study.

This paper outlines the methods, results, and future research opportunities.

To identify phenotypes of type 1 diabetes based on glucose curves from continuous glucose-monitoring (CGM) using functional data (FD) analysis to account for longitudinal glucose patterns. We present a reliable prediction model that can accurately predict glycemic levels based on past data collected from the CGM sensor and real-time risk of hypo-/hyperglycemic for individuals with type 1 diabetes.

A longitudinal cohort study of 443 type 1 diabetes patients with CGM data from a completed trial. The FD analysis approach, sparse functional principal components (FPCs) analysis was used to identify phenotypes of type 1 diabetes glycemic variation. We employed a nonstationary stochastic linear mixed-effects model (LME) that accommodates between-patient and within-patient heterogeneity to predict glycemic levels and real-time risk of hypo-/hyperglycemic by creating specific target functions for these excursions.

The majority of the variation (73%) in glucose trajectories was explained by the first two FPCs. Higher order variation in the CGM profiles occurred during weeknights, although variation was higher on weekends. The model has low prediction errors and yields accurate predictions for both glucose levels and real-time risk of glycemic excursions.

By identifying these distinct longitudinal patterns as phenotypes, interventions can be targeted to optimize type 1 diabetes management for subgroups at the highest risk for compromised long-term outcomes such as cardiac disease or stroke. Further, the estimated change/variability in an individual’s glucose trajectory can be used to establish clinically meaningful and patient-specific thresholds that, when coupled with probabilistic predictive inference, provide a useful medical-monitoring tool.

This paper is the fourth in a 5-part series that focuses on educating and training the clinical and translational science workforce. The goal of this paper is to delineate components of effective career development programs that go beyond didactic training. All academic health centers with a Clinical and Translational Science Award have a KL2 career development award for junior faculty, and many also have a TL1 training program for predoctoral and postdoctoral fellows. The training across these programs varies, however junior investigators across the United States experience similar challenges. Junior investigators can get overwhelmed with the demands of building their own research program, particularly in academia. 1Often, they are sidetracked by competing demands that can derail their progress. In these situations, junior investigators experience frustration and may search for alternative career paths. By providing them with additional professional skills in the 5 domains of: (1) self-awareness; (2) selecting the right topic and securing funding; (3) getting adequate support; (4) working with others; and (5) managing yourself, your career, and your demands. We will give junior investigators additional tools to manage these demands and facilitate their own career success.

The use of online platforms for pediatric healthcare research is timely, given the current pandemic. These platforms facilitate trial efficiency integration including electronic consent, randomization, collection of patient/family survey data, delivery of an intervention, and basic data analysis.

We created an online digital platform for a multicenter study that delivered an intervention for sleep disorders to parents of children with autism spectrum disorder (ASD). An advisory parent group provided input. Participants were randomized to receive either a sleep education pamphlet only or the sleep education pamphlet plus three quick-tips sheets and two videos that reinforced the material in the pamphlet (multimedia materials). Three measures – Family Inventory of Sleep Habits (FISH), Children’s Sleep Habits Questionnaire modified for ASD (CSHQ-ASD), and Parenting Sense of Competence (PSOC) – were completed before and after 12 weeks of sleep education.

Enrollment exceeded recruitment goals. Trial efficiency was improved, especially in data entry and automatic notification of participants related to survey completion. Most families commented favorably on the study. While study measures did not improve with treatment in either group (pamphlet or multimedia materials), parents reporting an improvement of ≥3 points in the FISH score showed a significantly improved change in the total CSHQ (P = 0.038).

Our study demonstrates the feasibility of using online research delivery platforms to support studies in ASD, and more broadly, pediatric clinical and translational research. Online platforms may increase participant inclusion in enrollment and increase convenience and safety for participants and study personnel.

The main objective of this study was to report stress and anxiety levels during the COVID-19 pandemic on early- to mid-career women researchers in healthcare sciences research and determine the associated factors.

A 50-item self-administered internet questionnaire was developed using a mix of Likert-type scales and open-ended response questions. The survey was distributed June 10–August 3, 2020. Anxiety and stress as well as personal/family demands were assessed through validated measures (Patient Reported Outcomes Measurement Information System [PROMIS]-Anxiety Short Form and Perceived Stress Scale [PSS]) and open-ended responses.

One hundred and fifty-one early-career women in healthcare sciences research completed the survey; mean respondent age was 37.3 ± 5.2 years; and all had a college degree or higher, 50.3% holding a PhD and 35.8% MD. Race and ethnicity were reported in 128; the majority were White (74.0%). One-third (31.2%) reported being “very much” concerned about reaching their research productivity goals and 30.1% were “very much” concerned about academic promotion and tenure. Fifty percent reported a “moderate” PROMIS anxiety score and 72.1% reported a “moderate” PSS score. For the open-ended responses, 65.6% reported a worry about their professional goals because of the COVID-19 pandemic. Major concerns revolved around finances, childcare, and job security.

Throughout the pandemic, early- and mid-career women in healthcare sciences research have reported moderate to high overall stress, anxiety, and worries. These concerns appear related to household settings, additional responsibilities, financial concerns, and reduced research productivity. Institutions and funding agencies should take these concerns into consideration and offer support.

Midcareer research faculty are a vital part of the advancement of science in U.S. medical schools, but there are troubling trends in recruitment, retention, and burnout rates.

The primary sampling frame for this online survey was recipients of a single R01 or equivalent and/or K-award from 2013 to 2019. Inclusion criteria were 3–14 years at a U.S. medical school and rank of associate professor or two or more years as assistant professor. Forty physician investigators and Ph.D. scientists volunteered for a faculty development program, and 106 were propensity-matched controls. Survey items covered self-efficacy in career, research, work-life; vitality/burnout; relationships, inclusion, trust; diversity; and intention to leave academic medicine.

The majority (52%) reported receiving poor mentoring; 40% experienced high burnout and 41% low vitality, which, in turn, predicted leaving intention (P < 0.0005). Women were more likely to report high burnout (P = 0.01) and low self-efficacy managing work and personal life (P = 0.01) and to be seriously considering leaving academic medicine than men (P = 0.003). Mentoring quality (P < 0.0005) and poor relationships, inclusion, and trust (P < 0.0005) predicted leaving intention. Non-underrepresented men were very likely to report low identity self-awareness (65%) and valuing differences (24%) versus underrepresented men (25% and 0%; P < 0.0005). Ph.D.s had lower career advancement self-efficacy than M.D.s (P < .0005).

Midcareer Ph.D. and physician investigators faced significant career challenges. Experiences diverged by underrepresentation, gender, and degree. Poor quality mentoring was an issue for most. Effective mentoring could address the concerns of this vital component of the biomedical workforce.

The Rockefeller Clinical Scholars (KL2) program began in 1976 and transitioned into a 3-year Master’s degree program in 2006 when Rockefeller joined the National Institute of Health Clinical and Translational Science Award program. The program consists of ∼15 trainees supported by the Clinical and Translational Science Award KL2 award and University funds. It is designed to provide an optimal environment for junior translational investigators to develop team science and leadership skills by designing and performing a human subjects protocol under the supervision of a distinguished senior investigator mentor and a team of content expert educators. This is complemented by a tutorial focused on important translational skills.

Since 2006, 40 Clinical Scholars have graduated from the programs and gone on to careers in academia (72%), government service (5%), industry (15%), and private medical practice (3%); 2 (5%) remain in training programs; 39/40 remain in translational research careers with 23 National Institute of Health awards totaling $23 million, foundation and philanthropic support of $20.3 million, and foreign government and foundation support of $6 million. They have made wide ranging scientific discoveries and have endeavored to translate those discoveries into improved human health.

The Rockefeller Clinical Scholars (KL2) program provides one model for translational science training.