The Pennsylvania Cancer Alliance Bioinformatics Consortium (PCABC, http://www.pcabc.upmc.edu) is one of the first major project-based initiatives stemming from the Pennsylvania Cancer Alliance that was funded for four years by the Department of Health of the Commonwealth of Pennsylvania. The objective of this was to initiate a prototype biorepository and bioinformatics infrastructure with a robust data warehouse by developing a statewide data model (1) for bioinformatics and a repository of serum and tissue samples; (2) a data model for biomarker data storage; and (3) a public access website for disseminating research results and bioinformatics tools. The members of the Consortium cooperate closely, exploring the opportunity for sharing clinical, genomic and other bioinformatics data on patient samples in oncology, for the purpose of developing collaborative research programs across cancer research institutions in Pennsylvania. The Consortium’s intention was to establish a virtual repository of many clinical specimens residing in various centers across the state, in order to make them available for research. One of our primary goals was to facilitate the identification of cancer-specific biomarkers and encourage collaborative research efforts among the participating centers.
The PCABC has developed unique partnerships so that every region of the state can effectively contribute and participate. It includes over 80 individuals from 14 organizations, and plans to expand to partners outside the State. This has created a network of researchers, clinicians, bioinformaticians, cancer registrars, program directors, and executives from academic and community health systems, as well as external corporate partners - all working together to accomplish a common mission.
The various sub-committees have developed a common IRB protocol template, common data elements for standardizing data collections for three organ sites, intellectual property/tech transfer agreements, and material transfer agreements that have been approved by each of the member institutions. This was the foundational work that has led to the development of a centralized data warehouse that has met each of the institutions’ IRB/HIPAA standards.
Currently, this “virtual biorepository” has over 58,000 annotated samples from 11,467 cancer patients available for research purposes. The clinical annotation of tissue samples is either done manually over the internet or semi-automated batch modes through mapping of local data elements with PCABC common data elements. The database currently holds information on 7188 cases (associated with 9278 specimens and 46,666 annotated blocks and blood samples) of prostate cancer, 2736 cases (associated with 3796 specimens and 9336 annotated blocks and blood samples) of breast cancer and 1543 cases (including 1334 specimens and 2671 annotated blocks and blood samples) of melanoma. These numbers continue to grow, and plans to integrate new tumor sites are in progress. Furthermore, the group has also developed a central web-based tool that allows investigators to share their translational (genomics/proteomics) experiment data on research evaluating potential biomarkers via a central location on the Consortium’s web site.
The technological achievements and the statewide informatics infrastructure that have been established by the Consortium will enable robust and efficient studies of biomarkers and their relevance to the clinical course of cancer. Studies resulting from the creation of the Consortium may allow for better classification of cancer types, more accurate assessment of disease prognosis, a better ability to identify the most appropriate individuals for clinical trial participation, and better surrogate markers of disease progression and/or response to therapy.
Objective: To document the prevalence, age and gender distribution of oral lesions in HIV infected adults and the influence of highly active antiretroviral therapy and correlate them to the immune status of the patients.
Materials and Methods: Oral lesions were diagnosed by a detailed physical examination by trained and calibrated examiners according to the case definitions established by the Oral HIV/AIDS research alliance. Demographic details, risk behavior patterns and oral symptoms and habits were collected by a questionnaire.
Results: 81 patients; 54 men and 27 women aged between 20 – 55 years participated in the study. A total of 49 patients; 60.5% had some oral lesion when examined. Oral candidiasis (21 %) and oral melanosis (21%) were the most common lesions, followed by linear gingival erythema, oral hairy leukoplakia, necrotizing ulcerative periodontitis/gingivitis, herpes labialis, parotid gland enlargement and reccurent apthous ulcers. Oral hairy leukoplakia was exclusively seen in men (p=0.018). All six cases of herpes simplex lesion were seen in non - anti retro viral group (p=0.073) while oral candidiasis was commonly noted in the anti retro viral group (p=0.073). Lowering CD4 counts had the strongest association with the prevalence of oral candidasis (p=0.012), pseudomembranous candidiasis (p=0.014) and oral hairy leukoplakia (p= 0.065).
Conclusion: This study shows a high prevalence of oral candidiasis, melanosis, linear gingival erythema and oral hairy leukoplakia in the patients.
Key words:HIV, AIDS, oral lesions, prevalence.
Purpose of review
This review covers the role of the Global HIV Vaccine Enterprise (the Enterprise), an alliance of independent organizations committed to development of a safe and effective HIV vaccine. It discussesthe history, impact on the field and future directions and initiatives of the alliance, in the context of recent progress in HIV vaccine research and development.
Significant progress has been made in the field since the release of the 2005 Scientific Strategic Plan (The Plan) of the Enterprise. Over the last year, the Enterprise embarked on an impact assessment of the 2005 Planand the development of the 2010 Plan. Enterprise Working Groups identified key priorities in the field, several of which are discussed in this review, including: changing the nature, purpose and process of clinical trials; increasing and facilitating data sharing; and optimizing existing and attracting new resources.
This isan important moment in HIV vaccine research. New clinical trial and laboratory results have created new opportunities to advance the search for an HIV vaccineand reinvigorated the field. The Enterprise will publish its 2010 Scientific Strategic Planthis year, providinga framework for setting new priorities and directions, and encouraging new and existing partners to embark on a shared scientific agenda.
Global HIV Vaccine Enterprise; Scientific Strategic Plan; Data Sharing; Clinical Trials
The National Institute on Drug Abuse established the National Drug Abuse Treatment Clinical Trials Network (CTN) in 1999 to improve the quality of addiction treatment using science as the vehicle. The network brings providers from community-based drug abuse treatment programs and scientists from university-based research centers together in an alliance that fosters bi-directional communication and collaboration. Collaboration enhanced the relevance of research to practice and facilitated the development and implementation of evidence-based treatments in community practice settings. The CTN’s 20 completed trials tested pharmacological, behavioral, and integrated treatment interventions for adolescents and adults; more than 11,000 individuals participated in the trials. This paper reviews the rationale for the CTN, describes the translation of its guiding principles into research endeavors, and anticipates the future evolution of clinical research within the Network.
The discovery of effective therapies for HIV requires a fundamental knowledge of retroviral infections. Research by the Public Health Service and collaborating organizations on oncogenic viruses, including retroviruses, has provided much of the basic understanding of retroviruses in general and anti-retroviral therapeutic strategies in particular. Early work by the Viral Cancer and Developmental Therapeutic Programs of the National Cancer Institute and the Intramural Research Program of the National Institute of Allergy and Infectious Diseases has contributed much of the current understanding of AIDS and its therapy. This paper describes the progress that has been made in the treatment of AIDS and the programs that have been created to develop future therapies. These programs include efforts to screen existing compounds for activity against HIV, to design new anti-HIV therapies, and to test potential agents in controlled clinical trials. As a result of these activities, researchers have identified one drug, AZT, that has proven effective in prolonging the lives of some patients with AIDS, and are developing several other promising compounds. The key question no longer is whether HIV infection can be treated, but what is the best and fastest way to develop new therapies and improve existing ones.
The alliance between parent and therapist was observed in a group-based parent-training intervention to improve social competency among children with attention-deficit/hyperactivity disorder (ADHD). The intervention, called Parental Friendship Coaching (PFC), was delivered to 32 parents in small groups as part of a randomized clinical trial. PFC was delivered in eight, 90-minute sessions to parents; there was no child treatment component. Observed parent–therapist alliance recorded among 27 of the parents was measured using the Therapy Process Observational Coding System—Alliance scale (TPOCS-A; McLeod, 2005). Early alliance and change in alliance over time predicted improvements in several parenting behaviors and child outcomes, including peer sociometrics in a lab-based playgroup. These preliminary findings lend support to the importance of examining the parent–therapist alliance in parent-training groups for youth social and behavioral problems.
In 2004, Mozambique, supported by large increases in international disease-specific funding, initiated a national rapid scale-up of antiretroviral treatment (ART) and HIV care through a vertical "Day Hospital" approach. Though this model showed substantial increases in people receiving treatment, it diverted scarce resources away from the primary health care (PHC) system. In 2005, the Ministry of Health (MOH) began an effort to use HIV/AIDS treatment and care resources as a means to strengthen their PHC system. The MOH worked closely with a number of NGOs to integrate HIV programs more effectively into existing public-sector PHC services.
In 2005, the Ministry of Health and Health Alliance International initiated an effort in two provinces to integrate ART into the existing primary health care system through health units distributed across 23 districts. Integration included: a) placing ART services in existing units; b) retraining existing workers; c) strengthening laboratories, testing, and referral linkages; e) expanding testing in TB wards; f) integrating HIV and antenatal services; and g) improving district-level management. Discussion: By 2008, treatment was available in nearly 67 health facilities in 23 districts. Nearly 30,000 adults were on ART. Over 80,000 enrolled in the HIV/AIDS program. Loss to follow-up from antenatal and TB testing to ART services has declined from 70% to less than 10% in many integrated sites. Average time from HIV testing to ART initiation is significantly faster and adherence to ART is better in smaller peripheral clinics than in vertical day hospitals. Integration has also improved other non-HIV aspects of primary health care.
The integration approach enables the public sector PHC system to test more patients for HIV, place more patients on ART more quickly and efficiently, reduce loss-to-follow-up, and achieve greater geographic HIV care coverage compared to the vertical model. Through the integration process, HIV resources have been used to rehabilitate PHC infrastructure (including laboratories and pharmacies), strengthen supervision, fill workforce gaps, and improve patient flow between services and facilities in ways that can benefit all programs. Using aid resources to integrate and better link HIV care with existing services can strengthen wider PHC systems.
In the late 1950s the North-Atlantic Treaty Organization (NATO) made a major effort to fund collaborative research between its member states. One of the first initiatives following the establishment of the alliance's Science Committee was the creation of a sub-group devoted to marine science: the Sub-committee on Oceanographic Research.This paper explores the history of this organization, charts its trajectory over the 13 years of its existence, and considers its activities in light of NATO's naval defence strategies. In particular it shows how the alliance's naval commands played a key role in the sub-committee's creation due to the importance of oceanographic research in the tracking of enemy submarines. The essay also scrutinizes the reasons behind the committee's dissolution, with a special focus on the changing landscape of scientific collaboration at NATO. The committee's fall maps onto a more profound shift in the alliance's research agenda, including the re-organization of defence research and the rise of environmentalism.
Cold War; forecasting; NATO; nuclear submarines; oceanography; Soviet Union; surveillance
The National Institute of Allergy and Infectious Diseases (NIAID) Division of AIDS (DAIDS) Enterprise Information System (DAIDS-ES) is a web-based system that supports NIAID in the scientific, strategic, and tactical management of its global clinical research programs for HIV/AIDS vaccines, prevention, and therapeutics. Different from most commercial clinical trials information systems, which are typically protocol-driven, the DAIDS-ES was built to exchange information with those types of systems and integrate it in ways that help scientific program directors lead the research effort and keep pace with the complex and ever-changing global HIV/AIDS pandemic. Whereas commercially available clinical trials support systems are not usually disease-focused, DAIDS-ES was specifically designed to capture and incorporate unique scientific, demographic, and logistical aspects of HIV/AIDS treatment, prevention, and vaccine research in order to provide a rich source of information to guide informed decision-making. Sharing data across its internal components and with external systems, using defined vocabularies, open standards and flexible interfaces, the DAIDS-ES enables NIAID, its global collaborators and stakeholders, access to timely, quality information about NIAID-supported clinical trials which is utilized to: (1) analyze the research portfolio, assess capacity, identify opportunities, and avoid redundancies; (2) help support study safety, quality, ethics, and regulatory compliance; (3) conduct evidence-based policy analysis and business process re-engineering for improved efficiency. This report summarizes how the DAIDS-ES was conceptualized, how it differs from typical clinical trial support systems, the rationale for key design choices, and examples of how it is being used to advance the efficiency and effectiveness of NIAID's HIV/AIDS clinical research programs.
Clinical trials management; medical informatics; enterprise architecture; web services; NIH, clinical research informatics
Addressing global health disparities in the developing world gained prominence during the first decade of the twenty-first century. The HIV/AIDS epidemic triggered much interest in and funding for health improvement and mortality reduction in low- and middle-income nations, particularly in sub-Saharan Africa. Alliances between U.S. academic medical centers and African nations were created through the departments of internal medicine and infectious disease. However, the importance of addressing surgical disease as part of global public health is becoming recognized as part of international health development efforts. We propose a novel model to reduce the global burden of surgical diseases in resource poor settings by incorporating a sustained institutional surgical presence with our residency training experience by placing a senior surgical resident to provide continuity of care and facilitate training of local personnel. We present the experiences of the University of North Carolina (UNC) Department of Surgery as part of the UNC Project in Malawi as an example of this innovative approach.
The HIV epidemic has raised important tensions in the relationship between Church and State in many parts of Latin America where government policies frequently negotiate secularity with religious belief and doctrine. Brazil represents a unique country in the region due to the presence of a national religious response to HIV/AIDS articulated through the formal structures of the Catholic Church. As part of an institutional ethnography on religion and HIV/AIDS in Brazil, we conducted an extended, multi-site ethnography from October 2005 through March of 2009 to explore the relationship between the Catholic Church and the Brazilian National AIDS Program. This case study links a national, macro-level response of governmental and religious institutions with the enactment of these politics and dogmas on a local level. Shared values in solidarity and citizenship, similar organizational structures, and complex interests in forming mutually beneficial alliances were the factors that emerged as the bases for the strong partnership between the two institutions. Dichotomies of Church and State and micro and macro forces were often blurred as social actors responded to the epidemic while also upholding the ideologies of the institutions they represented. We argue that the relationship between the Catholic Church and the National AIDS Program was formalized in networks mediated through personal relationships and political opportunity structures that provided incentives for both institutions to collaborate.
Brazil; Religion; HIV; Institutional ethnography; Catholic Church
Human resources for health are in crisis worldwide, especially in economically disadvantaged areas and areas with high rates of HIV/AIDS in both health workers and patients. International organizations such as the Global Health Workforce Alliance have been established to address this crisis. A technical working group within the Global Health Workforce Alliance developed recommendations for scaling up education and training of health workers. The paper will illustrate how decision-makers can use evidence and tools from an equity-oriented toolkit to scale up training and education of health workers, following five recommendations of the technical working group. The Equity-Oriented Toolkit, developed by the World Health Organization Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, has four major steps: (1) burden of illness; (2) community effectiveness; (3) economic evaluation; and (4) knowledge translation/implementation. Relevant tools from each of these steps will be matched with the appropriate recommendation from the technical working group.
The TB/HIV in Rio (THRio) study was launched in September 2005 to assess the impact of integrated tuberculosis (TB) and HIV treatment strategies in 29 HIV clinics in Rio de Janeiro, Brazil.
THRio is a cluster-randomized trial (CRT) to determine whether routine screening for and treatment of latent TB in HIV clinic patients with access to antiretroviral therapy will reduce TB incidence at the clinic level. THRio is part of the Consortium to Respond Effectively to AIDS/TB Epidemic that is implementing research studies to assess the impact of bold, new public health paradigms for controlling the AIDS/TB epidemic.
Twenty-nine public primary HIV clinics were randomly assigned a date to begin implementing TB screening procedures and provision of isoniazid preventive therapy (IPT) for TB/HIV coinfected patients. Final analysis of the CRT is expected in 2011.
Starting at date of tuberculin skin test (TST)/IPT implementation at each clinic through August 2010, 1670 HIV-infected patients initiated IPT, of which 215 are still receiving treatment. Of the remaining 1455 patients, 1230 (85%) completed therapy and only 20 (1.2%) patients initiating IPT reported adverse reactions leading to discontinuation of therapy. IPT completion was higher among HIV-infected patients receiving HAART (87%) than those not yet receiving HAART (79%, P < 0.01). Times to TST and IPT have markedly decreased postintervention, but remain considerably long. The richness of the THRio database has resulted in several analyses of this expansive cohort of HIV-infected patients that are reviewed here.
The national implementation of TST and IPT for HIV-positive patients in Brazil has been invigorated partly due to THRio’s baseline results. Expanded use of IPT in HIV patients in Rio de Janeiro is achievable with high adherence and low adverse events, although this effort requires a package of activities including training, advocacy and reorganization of services.
adherence; HIV; implementation; isoniazid preventive therapy; tuberculosis
This paper proposes a historical excursus of studies that have investigated the therapeutic alliance and the relationship between this dimension and outcome in psychotherapy. A summary of how the concept of alliance has evolved over time and the more popular alliance measures used in literature to assess the level of alliance are presented. The proposal of a therapeutic alliance characterized by a variable pattern over the course of treatment is also examined. The emerging picture suggests that the quality of the client–therapist alliance is a reliable predictor of positive clinical outcome independent of the variety of psychotherapy approaches and outcome measures. In our opinion, with regard to the relationship between the therapeutic alliance and outcome of psychotherapy, future research should pay special attention to the comparison between patients’ and therapists’ assessments of the therapeutic alliance. This topic, along with a detailed examination of the relationship between the psychological disorder being treated and the therapeutic alliance, will be the subject of future research projects.
alliance measures; evaluation of psychotherapeutic process; outcome of psychotherapy; therapist/patient relationship; therapeutic alliance; working alliance
Large brain size in mammals has been related to the number and complexity of social relationships, particularly social alliances within groups. The largest within-group male alliance known outside of humans is found in a social network (> 400) of Indian Ocean bottlenose dolphins (Tursiops aduncus) in Shark Bay Western Australia. Members of this dolphin 'super-alliance' cooperate against other alliances over access to females. Males within the super-alliance form temporary trios and occasionally pairs in order to consort with individual females. The frequent switching of alliance partners suggests that social relationships among males within the super-alliance might be relatively simple and based on an equivalence rule', thereby allowing dolphins to form large alliances without taxing their 'social intelligence'. The equivalence model predicts that the 14 males in the super-alliance should not exhibit differences in alliance stability or partner preferences. However, data from 100 consortships do not support the equivalence hypothesis. The 14 males exhibited striking differences in alliance stability and partner preferences suggesting that the super-alliance has a complex internal structure. Further, within the super-alliance, alliance stability correlates with consortship rate, suggesting that differentiated relationships within the super-alliance are based on competition for access to females.
On 16 and 17 July 2010, immediately prior to the XVIII International AIDS Conference in Vienna, Austria, the International AIDS Society held a workshop on the important topic of moving beyond antiretroviral therapy and addressing HIV persistence. “Towards a Cure: HIV Reservoirs and Strategies to Control Them” was chaired by Nobel laureate Françoise Barré-Sinoussi and co-sponsored by the French National Agency for Research on AIDS and Viral Hepatitis, Bundesministerium für Wissenschaft und Forschung, the National Institutes of Health, Sidaction and the Treatment Action Group. This article gives an overview of the findings presented at the workshop; complete abstracts are included in this supplement to the Journal of the International AIDS Society.
The National Institute of Mental Health and the National Action Alliance for Suicide Prevention have requested input into the development of a national suicide research agenda. In response, a working group of the American Association for Geriatric Psychiatry has prepared recommendations to ensure that the suicide prevention dialogue includes older adults, a large and fast-growing population at high risk of suicide. In this Open Forum, the working group describes three methodology roadblocks to research into suicide prevention among elderly persons and three paradigms that might provide directions for future research into suicide prevention strategies for older adults.
An independent quality assurance program has been established by the Virology Committee of the AIDS Clinical Trials Group in the Division of AIDS, National Institute of Allergy and Infectious Diseases, for monitoring polymerase chain reaction (PCR) assays for human immunodeficiency virus type 1 (HIV-1) DNA that are performed by 11 laboratories participating in multicenter clinical trials in the United States. To perform HIV-1 DNA PCR for patients in AIDS Clinical Trials Group protocols, each laboratory was initially certified by correctly testing a coded certification panel consisting of eight well-defined clinical whole-blood specimens and 30 cell pellets containing 0, 2, 5, 10, 20, or 50 8E5/LAV cells per 125,000 uninfected peripheral blood mononuclear cells. PCR was performed by one of two standardized commercial assays for amplification and nonisotopic detection of HIV-1 proviral DNA. For continuing certification, each laboratory must correctly test eight coded whole-blood samples per quarter and run three or four coded cell pellets and HIV-1 DNA copy standards with every PCR assay in real time. The PCR results for the coded pellets on each run are entered into an encrypted computer file, which immediately assesses the validity of the run. To date, 10 of 11 laboratories have correctly tested all HIV-1-positive and -negative samples in the initial certification panel on their first or second attempt. Subsequently, 9 of these 11 laboratories have continued to maintain their certified status. The use of commercial HIV-1 DNA PCR assays and an external quality assurance program have ensured that results from different laboratories are comparable and that problems with sensitivity and specificity are quickly identified.
We report here on the feasibility of implementing a semi-automated performance improvement system - Patient Feedback (PF) - that enables real-time monitoring of patient ratings of therapeutic alliance, treatment satisfaction, and drug/alcohol use in outpatient substance abuse treatment clinics. The study was conducted in 6 clinics within the National Institute on Drug Abuse Clinical Trials Network. It involved a total of thirty-nine clinicians and 6 clinic supervisors. Throughout the course of the study (4 week training period, 4 week baseline, 12 week intervention, 4 week post-intervention assessment, 1 year sustainability phase) there was an overall collection rate of 75.5% of the clinic patient census. In general, the clinicians in these clinics had very positive treatment satisfaction and alliance ratings throughout the study. However, one clinic had worse drug use scores at baseline than other participating clinics, and showed a decrease in self-reported drug use at post-intervention. Although the implementation of the PF system proved to be feasible in actual clinical settings, further modifications of the PF system are needed to enhance any potential clinical usefulness.
Performance Improvement; Substance Abuse; Feedback; Alliance; Treatment Satisfaction
The USAID-funded Capacity Project established the Global Alliance for Pre-Service Education (GAPS) to provide an online forum to discuss issues related to teaching and acquiring competence in family planning, with a focus on developing countries' health related training institutions. The success of the Global Alliance for Nursing and Midwifery's ongoing web-based community of practice (CoP) provided a strong example of the successful use of this medium to reach many participants in a range of settings.
GAPS functioned as a moderated set of forums that were analyzed by a small group of experts in family planning and pre-service education from three organizations. The cost of the program included the effort provided by the moderators and the time to administer responses and conduct the analysis.
Discussion and evaluation
Family planning is still considered a minor topic in health related training institutions. Rather than focusing solely on family planning competencies, GAPS members suggested a focus on several professional competencies (e.g. communication, leadership, cultural sensitivity, teamwork and problem solving) that would enhance the resulting health care graduate's ability to operate in a complex health environment. Resources to support competency-based education in the academic setting must be sufficient and appropriately distributed. Where clinical competencies are incorporated into pre-service education, responsible faculty and preceptors must be clinically proficient. The interdisciplinary GAPS memberships allowed for a comparison and contrast of competencies, opportunities, promising practices, documents, lessons learned and key teaching strategies.
Online CoPs are a useful interface for connecting developing country experiences. From CoPs, we may uncover challenges and opportunities that are faced in the absorption of key public health competencies required for decreasing maternal mortality and morbidity. Use of the World Health Organization (WHO) Implementing Best Practices Knowledge Gateway, which requires only a low bandwidth connection, gave educators an opportunity to engage in the discussion even in the most Internet access-restricted places (e.g. Ethiopia). In order to sustain an online CoP, funds must come from an international organization (e.g. WHO regional office) or university that can program the costs long-term. Eventually, the long-term effectiveness and sustainability of GAPS rests on its transfer to the members themselves.
Background: The Consortium on the Genetics of Schizophrenia (COGS) is an ongoing, National Institute of Mental Health–funded, 7-site collaboration investigating the occurrence and genetic architecture of quantitative endophenotypes related to schizophrenia. The purpose of this article is to provide a description of the COGS structure and methods, including participant recruitment and assessment. Methods: The hypothesis-driven recruitment strategy ascertains families that include a proband with a Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition diagnosis of schizophrenia, and at least one unaffected full sibling available for genotyping and endophenotyping, along with parents available for genotyping and (optional depending on age) endophenotyping. The family structure is selected to provide contrast in quantitative endophenotypic traits and thus to maximize the power of the planned genetic analyses. Probands are recruited from many sources including clinician referrals, local National Alliance for the Mentally Ill chapters, and advertising via the media. All participants undergo a standardized protocol that includes clinical characterization, a blood draw for genotyping, and endophenotype assessments (P50 suppression, prepulse inhibition, antisaccade performance, continuous performance tasks, letter-number span, verbal memory, and a computerized neurocognitive battery). Investigators participate in weekly teleconferences to coordinate and evaluate recruitment, clinical assessment, endophenotyping, and continuous quality control of data gathering and analyses. Data integrity is maintained through use of a highly quality-assured, centralized web-based database. Results: As of February 2006, 355 families have been enrolled and 688 participants have been endophenotyped, including schizophrenia probands (n = 154, M:F = 110:44), first-degree biological relatives (n = 343, M:F = 151:192), and community comparison subjects (n = 191, M:F = 81:110). Discussion: Successful multisite genetics collaborations must institute standardized methodological criteria for assessment and recruitment that are clearly defined, well communicated, and uniformly applied. In parallel, studies utilizing endophenotypes require strict adherence to criteria for cross-site data acquisition, equipment calibration and testing and software equivalence, and continuous quality assurance for many measures obtained across sites. This report describes methods and presents the structure of the COGS as a model of multisite endophenotype genetic studies. It also provides demographic information after the first 2 years of data collection on a sample for whom the behavioral data and genetics of endophenotype performance will be fully characterized in future articles. Some issues discussed in the reviews that follow reflect the challenges of evaluating endophenotypes in studies of the genetic architecture of endophenotypes in schizophrenia.
neurophysiology; neurocognitive; genes
Regional health information organizations (RHIOs) form the core of any
approach to creating the National Health Information Infrastructure. RHIOs
are computer-supported information sharing alliances composed of
health care institutions that exchange clinical, financial or administrative
data. Many uncertainties, including institution conversion costs, price-to-participate, and RHIO governance decisions, make estimating
the cost consequences difficult to establish. Current approaches to
health information technology investment rely on a net present value analysis, which
is inadequate to capture the dynamic, uncertain course
likely to occur in the RHIO environment. Methods from operations research
provide decision makers robust tools for exploring the cost and consequences
of RHIO structures. We present here an initial modeling approach
that allows explicit examination of RHIO structure and pricing options. Once
refined, these models will provide the core of a suite of
decision support tools for evaluation of RHIO pricing options, discount
rates, and optimal organizational structures.
The National Alliance for Medical Image Computing (NA-MIC), is a multi-institutional, interdisciplinary community of researchers, who share the recognition that modern health care demands improved technologies to ease suffering and prolong productive life. Organized under the National Centers for Biomedical Computing 7 years ago, the mission of NA-MIC is to implement a robust and flexible open-source infrastructure for developing and applying advanced imaging technologies across a range of important biomedical research disciplines. A measure of its success, NA-MIC is now applying this technology to diseases that have immense impact on the duration and quality of life: cancer, heart disease, trauma, and degenerative genetic diseases. The targets of this technology range from group comparisons to subject-specific analysis.
Brachytherapy; gynecologic; image analysis; knowledge bases; open source software; radiation therapy; registration; segmentation; shape analysis; slicer; 3D slicer
The purpose of this article is to describe the current status and future perspectives of the Japan Breast Cancer Research Group (JBCRG). The JBCRG was organized in 2002, with the following purpose: to plan and promote clinical trials and basic research in breast cancer domestically and multilaterally; to conduct research and surveys on domestic and foreign information on medical care for breast cancer and to diffuse and highlight such information; to improve and promote clinical technologies for breast cancer; to act as an intermediary to liaise and strengthen alliances with affiliated organizations; and, to contribute to the public welfare by improving outcomes in breast cancer. The clinical trials are led by doctors/investigators in the JBCRG. And the purpose is to establish standard treatment for patients and provide substantial evidence. The JBCRG implements international collaboration in some researches/studies. As of January 2012, fourteen trials have been closed and nine are open to recruitment.
Clinical trials; Clinical research; Preoperative systemic therapy; Breast cancer
We explored patient, therapist, and program variability in the alliance in relation to drug and alcohol use during treatment, and whether alliance mediates the relation of program characteristics to drug/alcohol use. Data (N=1613 patients) were drawn from a randomized clinical trial investigating the efficacy of an intervention that provided alliance and outcome feedback to 112 counselors across 20 community-based outpatient substance abuse treatment clinics in the northeast United States. Program characteristics were measured using the Organization Readiness for Change scale. Using multilevel modeling, we found that alliance was related to both drug and alcohol use during the past week at the patient and program levels of analysis, but not the counselor level. Several program characteristics were related to average drug and alcohol use. The alliance was not a mediator of these relationships. Program variability in the alliance is important to the alliance-outcome relationship in the treatment of substance abuse. Better outcomes can be achieved by improving both organizational functioning and the patient-counselor alliance.
Substance Abuse; Alliance; Program; Counselor