Consented MURDOCK Study participants complete a baseline health questionnaire at enrollment, as well as a brief physical exam and collection of blood and urine. Consent includes permission to access information from medical records, storage of collected samples in the biorepository, access to collected data and biospecimens for future approved research studies, and contact regarding new research study opportunities.
Data have been organized into “storefronts” that summarize characteristics of a population of research interest as well as available data and samples for that population.
Each storefront includes a cover page that summarizes the sources of data in the MURDOCK Study database, as well as important descriptions and definitions to help understand the data presented in the storefronts.
Duke Kannapolis also has published MURDOCK Study data, stripped of identifiers, in an interactive dashboard that functions as a self-service data exploration tool for collaborators.
Storefronts for the MURDOCK Study population and additional populations of interest can be found below:
Data sources, descriptions, and definitions:
The baseline questionnaire collects contact information, current residential street address, and primary physician; alternate contact information; date and place of birth; demographics; current or past diagnosis of 34 medical conditions; menopausal status in women; medications, vitamins and supplements; dietary and physical activity assessment; hours of sleep per night; tobacco and alcohol use; second-hand smoke exposure; and selected PROMIS® participant-reported outcomes domains. Socioeconomic data collected at baseline included marital status, highest level of education of participant and participant’s mother and father, employment status, mother’s and father’s occupations, housing (type, how paid for, number of adults and children in the household) and total household income. In addition, a brief physical exam (vital signs, height, weight, and waist circumference) was conducted at enrollment.
Medical conditions: ”Do you have, or have you ever had, any of the following [medical conditions]?” (yes, no, don’t know). Counts are unique participants reporting yes to specific condition. Medications: “Please list any pharmaceutical and/or natural medications (including vitamins) that you are currently taking.” Data are captured in free-text format as written by the participant and coded using RxNorm. Summary metrics are based on everything reported. Top 5 reported medications are limited to reported prescriptions.
Blood was collected at baseline and processed into the following specific samples: whole blood in EDTA for DNA extraction, whole blood in PAXgene for RNA extraction, plasma, serum and buffy coat in cryovials. Urine was collected and aliquoted in cryovials. Sample collection was not done systematically for MURDOCK enrollees; however, some nested sub cohorts and other studies enrolling MURDOCK registry participants include sample collection at follow up time points. All samples are stored at -80°C in a central biorepository current managed by Fisher BioServices, a division of Thermo Fisher Scientific, under a contractual agreement with Duke University.
Samples in inventory: Data are summarized by sample type as well as specific container and size. Participant counts are unique individuals with one or more aliquots. Aliquot counts are all unique samples for a given type and container, size. Freezers is a calculation of approximate storage requirements based on sample type/size, box size, and number of boxes that can be stored per freezer.
Participants are asked to complete a follow-up form once a year around the time of their original enrollment date. Participants may update contact information, primary care physician/practice and alternate contact. PROMIS domains are repeated at each annual time point to capture changes in participant-reported outcomes over time. The form collects new incidence/diagnosis of the same 34 medical conditions surveyed at baseline. Hospitalizations during the past year are collected along with reason, as well as specific medical procedures. Participants may update their medication list to reflect current medications, vitamins and supplements being taken at the time of follow up form completion.
Vital status: Death reported by family member or alternate contact is confirmed by obituary as the primary source. Cause of death is not captured. Follow-up metrics: Follow-up is defined as complete if participant fills out the survey online or by mail or phone. Completeness is measured as surveys completed relative to years eligible to complete follow-up.
Medical conditions: “Please indicate if you have received a new diagnosis of any of the following medical conditions in the past year (yes, no, don’t know).” Counts and percentages are unique participants reporting yes to specific condition in follow-up for participants that did NOT report yes at baseline.
Procedures: ”Please indicate if you have any of the following medical procedures in the past year.” Counts are unique participants reporting the specified procedure one or more times during follow up.
Hospitalizations: Participants are asked to report if they have been hospitalized within the last year, for each hospitalization they are asked to list reason(s) for hospitalization, admission date and hospital name. Reasons for hospitalization are captured as free-text responses as written by participants. Responses are coded, when possible, in order to list the most frequently reported reasons for hospitalization.
Medications: (see note above for medications reported at baseline). The denominator for data based on last follow-up are participants with at least one follow-up survey complete.
Duke has partnered with regional healthcare providers to integrate data from EHR systems for consented MURDOCK Study participants. Participants are identified in EHR systems with robust matching algorithms using common identifiers from the MURDOCK and EHR databases. Data are transferred under a data use agreement (DUA) with the specific provider organization which specifies the scope of data and frequency of transfers. Data availability vary by participant and depend on whether a participant has had one or more encounters with the healthcare provider system during the time period included in the dataset.
Available EHR datasets: Data are summarized by healthcare provider organizations. Counts are unique participants with one or more ICD codes in the EHR dataset. Available EHR domains: Data area summarized by domain in the EHR dataset. Counts are unique participants with one or records (rows of data) for the specified domain. Insights from available EHR data: Specific EHR data related to the population of research interest is presented with granularity when possible.
MURDOCK Study participants may be recruited to enroll in additional research study opportunities by Duke researchers or other collaborators. Data sharing is a condition of collaboration with the MURDOCK Study; therefore, data collected from MURDOCK Study participants and/or generated from biospecimens as part of additional research studies is returned for integration with all other MURDOCK registry data.
Storefronts for nested sub-cohorts summarize surveys, assessments and/or other data collected specifically as part of enrollment and participation in the study.
Samples in inventory: Samples are summarized if collected (see note above for samples collected at baseline).
Participation in other studies: Counts are participants from the population of research interest enrolled in the specified study listed. Brief descriptions of relevant studies are listed along with a summary of study procedures and/or data collected.