20 research outputs found

    Medulloblastoma in childhood: revisiting intrathecal therapy in infants and children

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    Advantages of the dental practice-based research network initiative and its role in dental education

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    Practice-based research networks (PBRNs) provide a novel venue in which providers can increase their knowledge base and improve delivery of care through participation in clinical studies. This article describes some aspects of our experience with a National Institute of Dental and Craniofacial Research-supported PBRN and discusses the role it can play in dental education. PBRNs create a structured pathway for providers to advance their professional development by participating in the process of collecting data through clinical research. This process allows practitioners to contribute to the goals of evidence-based dentistry by helping to provide a foundation of evidence on which to base clinical decisions as opposed to relying on anecdotal evidence. PBRNs strengthen the professional knowledge base by applying the principles of good clinical practice, creating a resource for future dental faculty, training practitioners on best practices, and increasing the responsibility, accountability, and scope of care. PBRNs can be the future pivotal instruments of change in dental education, the use of electronic health record systems, diagnostic codes, and the role of comparative effectiveness research, which can create an unprecedented opportunity for the dental profession to advance and be integrated into the health care system

    Periodontal Diagnosis Affected by Variation in Terminology

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    BACKGROUND: The randomized case presentation (RCP) study is designed to assess the degree of diagnostic accuracy for described periodontal cases. This is to lay the basis for practitioner calibration in the Practitioners Engaged in Applied Research and Learning (PEARL) Network for future clinical studies. METHODS: The RCP consisted of 10 case scenarios ranging from periodontal health to gingivitis and mild, moderate, and severe periodontitis. Respondents were asked to diagnose the described cases. Survey diagnoses were compared to two existing classifications of periodontal disease status. The RCP was administered via a proprietary electronic data capture system maintained by the PEARL Data Coordinating Center. Standard analytic techniques, including frequency counts and cross-tabulations, were used for categorical data with mean and standard deviation and median values reported for continuous data elements. RESULTS: Demonstrable variations in periodontal assessment for health, gingivitis, and mild, moderate, and severe periodontitis were found among the 130 PEARL general practitioners who participated in the RCP survey. The highest agreement for diagnosis among dentists was for severe periodontitis (88%) and the lowest for gingivitis (55%). The highest percentage of variation was found in cases with health and gingivitis. CONCLUSIONS: There was variation among PEARL practitioners in periodontal diagnosis that may affect treatment outcomes. Our findings add clinical support to recent publications suggesting a need for standardization of terminology in periodontitis diagnosis

    The formation of the advisory group on risk evaluation education for dementia

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    BackgroundWhen and how to communicate effectively the results of genetic and biomarker based prediction, detection, and quantification of the brain substrates of dementia involve important ethical and legal issues critical for precision medicine. The urgency of the issue has increased as People Living with Dementia (PLwD) and with Risk for Dementia (PwRD) can access direct to consumer genetic testing, amyloid targeting drugs, and clinical amyloid PET scans. To address the need for effective dissemination and consultation, an advisory group was convened that welcomes all interested members.MethodMembers attend two meetings monthly via phone/computer/WebEx. One meeting is a targeted working group that focuses on the following: 1. Symptomatic (PLwD), 2. Asymptomatic (PwRD), 3. Research, 4. Ethics/Healthcare Law, 5. Trainee/Mentorship. These discussion groups hear from and present to stakeholders (PLwD/PwRD/caregivers, professional organizations, companies) to solicit feedback on the efficacy of their efforts. Members also attend a monthly - all hands- meeting where they receive updates from other groups and hear presentations on emerging research and resources.ResultThe advisory group is composed of 104 members who represent advocacy/stakeholders (21%, e.g. professional organization representatives, (PLwD/PwRD/caregivers, FDA), academia (78%, e.g. university, funders, foundations), and healthcare law (1%). Professions include geneticists, genetic counsellors, researchers, clinicians, ethicists, and lawyers. Motivations for joining include improving communication in research and clinical contexts, mitigating potential negative impacts (e.g.emotional distress or discrimination), and protecting rights to know. Topics have included DTC genomics, the impact of APOE disclosure, genetics and personalized medicine, ecological momentary assessment of response to disclosure, and ethical issues in national and international research registries (EPAD). Activities included a survey on disclosure practices in NIA funded ADCs and collaborations with ADEAR. Stakeholders varied in concerns ranging from a need to protect patients from disclosure to a need to protect the right of access.ConclusionMembership is increasing and is engaging diverse specialties and stakeholders who provide education and consultation around communication and use of genetic and biomarkers related to dementia. The group structure and inclusion of members from multiple organizations supports open and free collaboration. Future efforts will be developing structured education for stakeholders and publications.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/163965/1/alz045562.pd
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