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  • A 2-Year Clinical Evaluation of Fissure Sealants
    UMB Dataset

    Alternate Title(s)
    Evaluation of Resin Based and Glass Ionomer Based Sealants Placed With or Without Tooth Preparation
    Authors
    Vineet Dhar
    Haiyan Chen
    Description

    25 children ranging in age from 6 to 10 years participated in this bilateral split-mouth study evaluating two dental sealants for retention and secondary caries development. Data were collected comparing resin based and glass ionomer based sealants with and without tooth preparation at 6-month intervals over a 2 year period. Dataset includes demographic and clinical measures and sealant performance evaluation and comparison at 6, 12, 18 and 24 months.

    Subject
    Dental Materials
    Geographic Coverage
    India
    Access Rights
    Application Required
  • Amish Complex Genetic Disease Database
    UMB Dataset

    Description

    The Amish Research Group of the University of Maryland School of Medicine has been studying the Old Order Amish population in Lancaster County, PA, since 1993. This database currently consists of health-related data on over 7,000 adults resulting from studies ranging from population and basic science to clinical and translational research. Areas of investigation include: Cardiovascular Risk, Diabetes, Bone Health, Blood Pressure, Vascular Imaging, Aging, Breast Tissue Density, Platelet Aggregation, Microbiome, Wellness, and Brain Imaging. Extensive genetic data (genotyping and sequencing) is also available.

    Subject
    Amish
    Ethnic Groups/genetics
    Genetics, Population
    Health Status Indicators
    Geographic Coverage
    Pennsylvania
    Access Rights
    Access granted on an individual basis dependent upon request and consent considerations
    Local Experts
    Alan R. Shuldiner
    Braxton C. Mitchell
  • Antipsychotic Treatment Among Youth in Foster Care
    UMB Dataset

    Authors
    Susan dosReis
    Yesel Yoon
    David M. Rubin
    Mark A. Riddle
    2 more author(s)...
    Description

    Data from Medicaid fee-for-service and managed care claims from one Mid-Atlantic state were analyzed for this cross-sectional study. The dataset consists of a total of 16,969 youths under the age of 20 with a mental health diagnosis and a pharmacy claim for antipsychotic medication in 2003. Data for each individual includes demographic, Medicaid program category (ie, foster care, disabled), psychiatric diagnostic codes, and psychotropic medications by major therapeutic class.

    Subject
    Child, Foster
    Medicaid
    Psychotropic Drugs
    Timeframe
    2003
  • Atrial Fibrillation Follow-Up Investigation of Rhythm Management (AFFIRM)

    Alternate Title(s)
    AFFIRM
    Description

    The AFFIRM clinical trial was instituted to compare the impact on total mortality between two treatment strategies for managing atrial fibrillation (AF): maintenance of sinus rhythm (includes control of heart rate) and control of heart rate alone. Anticoagulation was used with both treatments. 4060 patients from over 200 sites in the U.S. and Canada participated in the study. All enrollees had AF and at least one additional risk factor for stroke or death. Dataset includes patient baseline characteristics, clinical measures, medications, hospitalizations, major adverse events and mortality, and cognitive ability assessments as well as selected quality of life measures.

    Subject
    Arrhythmias, Cardiac
    Geographic Coverage
    Canada
    United States
    Access Rights
    Submission of a request via link on the BioLINCC site
    Local Experts
    Erika Friedmann
  • Attitudes About Stimulant Medication for Attention-Deficit/Hyperactivity Disorder Among African American Families in an Inner City
    UMB Dataset

    Authors
    Susan dosReis
    Arlene Butz
    Paul H. Lipkin
    Julia S. Anixt
    2 more author(s)...
    Description

    This dataset consists of survey responses from 57 African American parents/caregivers whose child was receiving care for ADHD in a university-affiliated pediatric primary care unit. The 47 item questionnaire entitled Attitudes, Satisfaction, Knowledge, and Medication Experiences (ASK-ME) was developed by the primary author to assess views of stimulant medication for ADHD. In addition to demographic information, the dataset includes treatment characteristics, whether or not the child received counseling, and responses to 7 items specifically related to attitude toward medication. A copy of the survey is available from Dr. Susan dosReis upon request.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Geographic Coverage
    Baltimore (Md.)
  • Attribute Development Using Continuous Stakeholder Engagemement to Prioritize Treatment Decisions: A Framework for Patient-Centered Research
    UMB Dataset

    Authors
    Susan dosReis
    Wendy Castillo Camelo
    Melissa M. Ross
    Marcy Fitz-Randolph
    2 more author(s)...
    Description

    This study investigated a systematic process for using qualitative data to identify attributes and levels most important to caregivers in making health care treatment decisions. Grounded theory methodology was selected for its suitability in assessing an individual’s response to a specific experience. Stakeholder advisors worked with academic researchers in all phases of the project. A total of 48 caregivers were recruited from community support groups from across Maryland. Criteria for selection were a) responsibility for a child 26 years or younger, b) who had an intellectual, emotional, or social developmental disability and, c) with a concomitant mental health condition. 6 caregivers participated in in–depth interviews while the remaining 42 were distributed among 6 focus groups. This dataset includes family demographics, child characteristics (e.g. school grade level, diagnoses, treatment, behavioral problems, etc.), interview transcripts, focus group data, and attribute descriptions and levels.

    Subject
    Caregivers
    Comorbidity
    Decision Making
    Developmental Disabilities
    Geographic Coverage
    Maryland
  • Best-Worst Scaling to Prioritize Outcomes Meaningful to Caregivers of Youth with Mental Health Multimorbidities: A Pilot Study
    UMB Dataset

    Authors
    Susan dosReis
    Wendy Castillo Camelo
    Melissa M. Ross
    Saad Tariq
    Description

    This pilot study tested the use of a best-worst scaling (BWS) instrument to aid caregivers of a child with mental health comorbidities in clarifying preferences for treatment outcomes. BWS methodology closely approximates real-life decision-making by requiring the selection of one “most important” and one “least important” among a group of competing attributes. 38 caregivers were recruited from support groups in Maryland from March through July of 2015. Criteria for participation were a) their child was 21 years or younger, b) was diagnosed with a developmental delay related to cognitive or emotional disability and, c) with a comorbid mental illness (i.e. ADHD, depression, anxiety, etc.). Subsequent to survey completion, the caregivers took part in one of 6 debriefing sessions to determine the ease of comprehension, relevance of the concepts, distinctiveness of the statements, and clarity of language. The dataset includes family demographics, child characteristics (diagnoses, type of treatment, etc.), session transcripts, and statistics associated with the caregiver responses to the attributes included in the BWS instrument.

    Subject
    Caregivers
    Comorbidity
    Decision Making
    Developmental Disabilities
    Geographic Coverage
    Maryland
    Timeframe
    2015
  • Caregiver Treatment Preferences for Children with Attention Deficit/Hyperactivity Disorder
    UMB Dataset

    Alternate Title(s)
    Caregiver Treatment Preferences for Children with ADHD
    Authors
    Susan dosReis
    Description

    This dataset is the result of an investigation of caregivers’ management and treatment preferences for their ADHD child. From January 2013 through March 2015 a total of 184 caregivers of children 4 to 14 years of age were recruited from primary care, pediatric outpatient clinics, and support organizations in Maryland. The study explored caregiver variability and priorities when considering medication, change in management options over time, and preference for different treatment attributes. Data were collected using Best-Worst scaling and the Vanderbilt ADHD Diagnostic Parent Rating Scale (VADPRS). This dataset consists of caregiver and child demographic information, child diagnoses and treatment characteristics data, and caregiver preferences with regard to medication and observed and desired improvements in their child’s ADHD.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Geographic Coverage
    Maryland
  • Cervicovaginal Microbiota and Local Immune Response Modulate the Risk of Spontaneous Preterm Delivery
    UMB Dataset

    Authors
    Jacques Ravel
    Michal A. Elovitz
    Pawel Gajer
    Valerie Riis
    3 more author(s)...
    Description

    This study was undertaken to investigate the correlation between cervicovaginal microbiota, immunological factors, and race and the risk of premature birth. From a cohort of 2000 women with singleton pregnancies, 539 participated in the research with 432 delivering full term and 107 experiencing spontaneous preterm delivery. The racial breakdown consisted of 402 African American, 115 White, and 22 Other. Cervicovaginal samples and anthropomorphic measurements were collected during 3 visits: between 16-20, 20-24, and 24-28 weeks of gestation. The microbiota was characterized, immunological profiles were established, and the results evaluated according to race and delivery outcome. Data includes demographic, phenotype, clinical measures, statistical and metagenomic.

    Subject
    Premature Birth
    Risk Factors
    Geographic Coverage
    Maryland
    Pennsylvania
    Access Rights
    Submission of a Data Access Request via the dbGaP controlled access portal
  • Challenge: An obesity prevention intervention among adolescents
    UMB Dataset

    Authors
    Maureen M. Black
    Description

    This study evaluated a 12-session home/community-based health promotion/obesity prevention program (Challenge!) on changes in Body Mass Index (BMI) status and body composition. The dataset includes all the related measures at three time points (baseline, 6-months and 12-months after baseline). It also includes other measures, e.g. body dissatisafaction and depressive symptoms.

    Subject
    Obesity/prevention & control
    Geographic Coverage
    Maryland
    Access Rights
    Permission subject to IRB approval

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