Purpose Application of whole exome and whole genome sequencing is likely to increase in clinical practice, public health contexts, and research. We examined how parental preferences for learning information from genome-scale testing is influenced by the characteristics of non-medically actionable genetic disorders in children, and assessed if preferences differed by gender and between African-American and White respondents. Methods We conducted a web-based discrete choice experiment with 1 289 parents of young children. Participants completed “choice tasks” using pairs of profiles describing sequencing results for hypothetical genetic disorders, selected the profile they believed would be more important to know, and answered questions that measured their level of distress. Results The likelihood that the disorder would develop given a true-positive test result was most important to parents. Parents showed greater interest in learning sequencing results for disease profiles with more severe manifestations. This was associated with greater distress. Differences by gender and race reflected small differences in magnitude, not direction. Conclusion Parents’ preferred learning results about genetic disorders with more severe manifestations, even when this knowledge was associated with increased distress. These results may help clinicians support parental decision making by revealing which types of sequencing results parents are interested in learning.

To optimize dissemination, Personalized Trial designers should seek to minimize out-of-pocket costs and time burden of self-monitoring. They should also consider adaptive designs that can accommodate subgroup differences in design preferences.

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Background Clinical trial recruitment is the rate-limiting step in developing new treatments. To understand inflammatory bowel disease (IBD) patient recruitment, we investigated two questions: Do changes in clinical trial attributes, like monetary compensation, influence recruitment rates, and does this influence differ across subgroups? Methods We answered these questions through a conjoint survey of 949 adult IBD patients. Results Recruitment rates are influenced by trial attributes: small but significant increases are predicted with lower placebo rates, reduced number of endoscopies, less time commitment, open label extension, and increased involvement of participant’s primary GI physician. A much stronger effect was found with increased monetary compensation. Latent class analysis indicated three patient subgroups: some patients quite willing to participate in IBD trials, some quite reluctant, and others who can be persuaded. The persuadable group is quite sensitive to monetary compensation, and payments up to US$2,000 for a 1-year study could significantly increase recruitment rates for IBD clinical trials. Conclusions This innovative study provides researchers with a framework for predicting recruitment rates for different IBD clinical trials.

ObjectiveTo describe individual patient preferences for Personalised Trials and to identify factors and conditions associated with patient preferences.DesignEach participant was presented with 18 conjoint questions via an online survey. Each question provided two choices of Personalised Trials that were defined by up to eight attributes, including treatment types, clinician involvement, study logistics and trial burden on a patient.SettingOnline survey of adults with at least two common chronic conditions in the USA.ParticipantsA nationally representative sample of 501 individuals were recruited from the Chronic Illness Panel by Harris Poll Online. Participants were recruited from several sources, including emails, social media and telephone recruitment of the target population.Main outcome measuresThe choice of Personalised Trial design that the participant preferred with each conjoint question.ResultsThere was large variability in participants’ preferences for the design of Personalised Trials. On average, they preferred certain attributes, such as a short time commitment and no cost. Notably, a population-level analysis correctly predicted 62% of the conjoint responses. An empirical Bayesian analysis of the conjoint data, which supported the estimation of individual-level preferences, improved the accuracy to 86%. Based on estimates of individual-level preferences, patients with chronic pain preferred a long study duration (p≤0.001). Asthma patients were less averse to participation burden in terms of data-collection frequency than patients with other conditions (p=0.002). Patients with hypertension were more cost-sensitive (p<0.001).ConclusionThese analyses provide a framework for elucidating individual-level preferences when implementing novel patient-centred interventions. The data showed that patient preference in Personalised Trials is highly variable, suggesting that individual differences must be accounted for when marketing Personalised Trials. These results have implications for advancing precise interventions in Personalised Trials by indicating when rigorous scientific principles, such as frequent monitoring, is feasible in a substantial subset of patients.