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PubMed1998

Clinical management of the multiple endocrine neoplasia syndromes: results of a computerized opinion poll at the Sixth International Workshop on Multiple Endocrine Neoplasia and von Hippel-Lindau disease.

OBJECTIVES AND DESIGN: In order to provide all participants of the Sixth International Workshop on Multiple Endocrine Neoplasia and von Hippel-Lindau Disease with the opportunity to express their opinion on medical, ethical and social issues on clinical management of these hereditary cancer syndromes, a meeting employing an interactive voting system was organized. RESULTS: In many aspects, the majority of the participants shared the same opinion. The following percentages of participants felt that, if a specific germline mutation is present in a definitely affected family member, DNA diagnosis should be performed in the offspring of this patient before the age of 10: 78% for MEN-1, 93% for MEN-2, and 71% for VHL. About 71% felt the clinical specialist should provide information about the consequences of DNA analysis and be responsible for disclosing the DNA test results and performing genetic counselling. If possible, selective surgery is preferred to maintain organ function. To make a complete diagnosis in a patient with an apparently sporadic tumour, 89% believed that mutation analysis of germline DNA is mandatory in order to investigate the possibility of inherited disease. In several areas, controversial opinions exist, depending on diversity in discipline, specific research area, experience in the field, and cultural and religious backgrounds. In particular, in vitro fertilization combined with pre-implantation genetic diagnosis is an area which attracts considerable emotion. CONCLUSIONS: In order to avoid confusion in the families, explicit and common guidelines are needed for the identification, treatment and follow-up of individuals who have predisposing MEN or VHL mutations. Close collaboration between endocrinologists, oncologists, surgeons, pathologists, psychologists and geneticists is required in order to establish and verify such guidelines.

Attitude of Health Personnel↗

PubMed2002

Vaccination and risk communication: summary of a workshop, Arlington Virginia, USA, 5-6 October 2000.

The declining incidence of vaccine-preventable diseases has led to an increased public focus on the issue of vaccine safety. In an environment of increased consumerism, interest in alternative health practices and anti-vaccination lobbying, media reports that call into question the safety of scheduled vaccines can significantly raise parents' concerns. Recent media coverage of a suggested but unproved link between the measles-mumps-rubella vaccine and autism has highlighted the challenges of providing a consistent and co-ordinated response. For those concerned about effectively communicating the benefits and risks of vaccination, the field of risk communication can provide helpful insights. This paper summarizes the Workshop on Vaccine Communication held in the USA during October 2000. It highlights the perspectives given by consumers, providers, journalists and risk-communication experts and discusses implications for Australia. These centre around how government and health professionals might respond to vaccine safety scares in the public arena, and to parental concerns raised in clinical encounters. Finally, the potential risks and benefits of engaging with the anti-vaccination lobby are outlined.

Australia↗

PubMed2000

Workshop Report: Combining the staging system of the International Federation of Gynecology and Obstetrics with the scoring system of the World Heath Organization for Trophoblastic Neoplasia. Report of the Working Committee of the International Society for the Study of Trophoblastic Disease and the International Gynecologic Cancer Society.

During the past 5 years the International Society for the Study of Trophoblastic Disease and the International Gynecological Cancer Society have moved to modify the staging system for trophoblastic disease by combining the staging of the International Federation of Gynecology and Obstetrics (FIGO) with the scoring system of the World Health Organization (WHO). By making significant changes in both, the classification will be more acceptable worldwide leading to uniform use by physicians reporting management results in trophoblastic disease. This is the report of the Rome Workshop, which will be presented for ratification to the FIGO Staging Committee in September 2000.

Journal Article↗

PubMed1996

Report on the Sixth International Society of Blood Transfusion Platelet Serology Workshop.

BACKGROUND: The Sixth International Society of Blood Transfusion Platelet Serology Workshop continued studies to identify methods to detect platelet-specific antigens and antibodies. STUDY DESIGN AND METHODS: The study was designed to meet three goals. The first was the establishment of antigen-typed platelet panels and determination of the correlation between serologic and DNA typing of platelet-specific antigens. The second goal was the determination of the proficiency of detecting platelet-specific antibodies by laboratory and by technique. The third goal was the identification of any platelet-specific antibodies present in uncharacterized (unknown) antisera. RESULTS: For platelet-antigen typing, concordance between serologic testing and DNA techniques was 93 percent for oligonucleotide typing and 92 percent for allele-specific restriction site analysis. Agreement between these two was 98 percent. Individual laboratories correctly identified the antibodies contained in coded sera 79 +/- 17 percent of the time. The expected results were obtained from the modified antigen-capture enzyme-linked immunosorbent assay in 75 +/- 46 percent of instances, from the monoclonal antibody-specific immobilization of platelet antigens assay in 72 +/- 24 percent of instances, from the mixed passive hemagglutination assay in 71 +/- 13 percent, from radioimmunoprecipitation procedures in 67 +/- 47 percent, and from Western blot 34 +/- 40 percent. Seven (54%) of 13 antisera of unknown specificity were determined to contain clearly identifiable platelet-specific alloantibodies. CONCLUSION: Concordant results were achieved by using either serologic or DNA techniques to identify platelet-specific antigens. Except for the significantly lower results found with Western blotting, all other platelet-specific antibody assays were comparable. Established serologic laboratories can identify and characterize plate-specific antibodies.

Antibody Specificity↗

PubMed2001

United Kingdom Children's Cancer Study Group (UKCCSG) radiotherapy and brain tumour groups: medulloblastoma/PNET and craniospinal radiotherapy (CSRT): report of a workshop held in Leeds, 30 June 1999.

Primitive neuroectodermal tumours (PNET), of which cerebellar medulloblastoma is the most frequent, are embryonal central nervous system tumours arising mainly in children. They are characterized by their propensity for metastasis via the cerebrospinal fluid. They are radiosensitive and craniospinal radiotherapy (CSRT) is an important part of their management. This is a complex radiotherapy (RT) technique, the accuracy of which contributes to the survival and quality of survival of treated children. In the last 25 years, European and North American collaborative studies have investigated the role of adjuvant chemotherapy. The planning and delivery of CSRT have to be of the highest quality. It is important to incorporate all modern technical RT developments into CSRT. It is possible that optimizing fractionation may further improve outcome. The purpose of this workshop was to review the current status of CSRT planning and administration in the light of RT developments. Current results of the treatement of medulloblastoma and PNET were reviewed and UK involvement in possible future collaborative trials was discussed.

Brain↗

PubMed2003

Uniform response criteria in Waldenstrom's macroglobulinemia: consensus panel recommendations from the Second International Workshop on Waldenstrom's Macroglobulinemia.

Waldenstrom's macroglobulinemia (WM) is a malignant disorder of lymphoplasmacytic cells that produce a monoclonal immunoglobulin M (IgM). Since the original description by Jan Waldenström of three patients with symptoms of hyperviscosity due to circulating monoclonal IgM, the definition of WM has been controversial. Standardized criteria for diagnosis have now been proposed, including the presence of any IgM monoclonal protein and marrow and/or nodal lymphoplasmacytic cells. Although previous response criteria have generally incorporated parameters for monoclonal protein reduction and/or improvement of marrow/nodal involvement, specific and uniform response criteria are needed to facilitate comparisons of response, remission duration, progression-free survival, and overall survival in clinical trials similar to those previously established for other diseases such as chronic lymphocytic leukemia, lymphoma, and myeloma. This is of particular importance as new agents are developed and evaluated. This presentation represents consensus recommendations for uniform response criteria for use in assessing responses to treatment for patients with WM, which were prepared in conjunction with the Second International Workshop held in Athens, Greece during September 2002.

Antineoplastic Agents↗

PubMed2003

Prognostic markers and criteria to initiate therapy in Waldenstrom's macroglobulinemia: consensus panel recommendations from the Second International Workshop on Waldenstrom's Macroglobulinemia.

This presentation represents consensus recommendations on prognostic markers and criteria to initiate therapy in patients with Waldenstrom's macroglobulinemia (WM), which were prepared in conjunction with the Second International Workshop held in Athens, Greece during September 2002. The panel recommended that initiation of therapy should not be based on the IgM level per se since this may not correlate with the clinical manifestations of WM. The consensus panel agreed that initiation of therapy was appropriate for patients with constitutional symptoms such as recurrent fever, night sweats, fatigue due to anemia, or weight loss. The presence of progressive, symptomatic lymphadenopathy or splenomegaly provide additional reasons to begin therapy. The presence of anemia with a hemoglobin value of <or= 10 g/dL or a platelet count < 100 x 10(9)/L due to marrow infiltration also justifies treatment. Certain complications such as hyperviscosity syndrome, symptomatic sensorimotor peripheral neuropathy, systemic amyloidosis, renal insufficiency, or symptomatic cryoglobulinemia may also be indications for therapy. Recommendations for follow-up of watch-and-wait patients are that those with monoclonal gammopathy of undetermined significance (MGUS) should have serum protein electrophoresis repeated each year. Patients with asymptomatic (smoldering) macroglobulinemia should be evaluated every 6 months. Regarding prognostic markers, hemoglobin and beta(2)-microglobulin levels at diagnosis are important prognostic markers in WM: they influence the timing of treatment and survival. Age is a consistently important prognostic factor for survival. However, the panel felt that current data are inadequate to support the use of any prognostic marker to select the timing and type of therapy, and called for studies on the application of prognostic markers in WM.

Age Factors↗

PubMed2003

Treatment recommendations in Waldenstrom's macroglobulinemia: consensus panel recommendations from the Second International Workshop on Waldenstrom's Macroglobulinemia.

This presentation represents consensus recommendations for the treatment of patients with Waldenstrom's macroglobulinemia (WM), which were prepared in conjunction with the second International Workshop held in Athens, Greece during September 2002. The faculty adopted the following statements for the management of patients with Waldenstrom's macroglobulinemia: (1) Alkylating agents, nucleoside analogues, and rituximab are reasonable choices for first line therapy of WM. (2) Both cladribine and fludarabine are reasonable choices for the therapy of WM. (3) Combinations of alkylating agents, nucleoside analogues, or rituximab should at this time be encouraged in the context of a clinical trial. (4) In WM, rituximab can cause a sudden rise in serum IgM and viscosity levels in certain patients, which may lead to complications, therefore close monitoring of these parameters and symptoms of hyperviscosity is recommended for WM patients undergoing rituximab therapy. (5) For relapsed disease, it is reasonable to use an alternate first line agent or re-use of the same agent; however, since autologous stem cell transplantation may have a role in treating patients with relapsed disease it is recommended that for patients in whom autologous transplantation is seriously being considered, exposure to alkylator or nucleoside analogue drugs should be limited. (6) Combination chemotherapy for patients who can tolerate myelotoxic therapy, thalidomide alone or with dexamethasone, can reasonably be considered to have relapsed. (7) Autologous stem cell transplantation may be considered for patients with refractory or relapsing disease. (8) Allogeneic transplantation should only be undertaken in the context of a clinical trial. (9) Plasmapheresis should be considered as interim therapy until definitive therapy can be initiated. (10) Rituximab should be considered for patients with IgM-related neuropathies. (11) Corticosteroids may be useful in the treatment of symptomatic mixed cryoglobulinemia. (12) Splenectomy is rarely indicated but has been used to manage painful splenomegaly and hypersplenism.

Amyloidosis↗

PubMed2003

Clinicopathological definition of Waldenstrom's macroglobulinemia: consensus panel recommendations from the Second International Workshop on Waldenstrom's Macroglobulinemia.

This presentation represents consensus recommendations for the clinicopathological definition of Waldenstrom's macroglobulinemia (WM), which were prepared in conjunction with the Second International Workshop held in Athens, Greece during September 2002. WM is an uncommon lymphoproliferative disorder characterized primarily by bone marrow infiltration and IgM monoclonal gammopathy. It should be considered a distinct clinicopathological entity rather than a clinical syndrome secondary to IgM secretion. The underlying pathological diagnosis in WM is lymphoplasmacytic lymphoma as defined by the World Health Organization (WHO) and Revised European-American Lymphoma (REAL) classification criteria. The concentration of monoclonal IgM can vary widely in WM and it is not possible to define a concentration that reliably distinguishes WM from monoclonal gammopathy of undetermined significance (MGUS) and other lymphoproliferative disorders. A diagnosis of WM can therefore be made irrespective of IgM concentration if there is evidence on a bone marrow trephine biopsy of bone marrow infiltration by lymphoplasmacytic lymphoma with predominantly an intertrabecular pattern, supported by appropriate immunophenotypic studies. Simple criteria to distinguish patients with symptomatic WM who require therapy from those with asymptomatic WM and MGUS were also proposed. Patients with clinical features attributable to IgM monoclonal gammopathy but no overt evidence of lymphoma are considered to constitute a distinct clinical group and the term "IgM-related disorders" is proposed.

CD5 Antigens↗

PubMed2002

Building complementary and alternative health care research capacity: workshop report.

Lack of research into the safety and efficacy of CAM has been identified as a barrier to collaboration between conventional and CAM practitioners. As an initial step to address this issue, Health Canada held an invitational roundtable discussion with researchers, practitioners and policy makers to explore specific issues related to CAM research capacity and literacy. The objectives of this workshop were to identify and prioritize CAM research infrastructure and training needs; and to identify strategies for meeting high priority needs. Eleven individuals representing three CAM groups, university-based researchers with experience in CAM research, and policy makers attended. Discussion focussed around research literacy, capacity, funding and leadership. Several recommendations were made including an advisory group, a needs assessment, support for research networks, development of learning modules, a review of existing research programmes, support for centres of excellence in CAM research, and funding for research meetings.

Canada↗

PubMed2001

The relationship of asthma therapy and Churg-Strauss syndrome: NIH workshop summary report.

The Churg-Strauss syndrome (CSS) is a distinct form of vasculitis that is notable for its eosinophilia and frequent associations with asthma and sinusitis. Because there has been an increasing recognition that CSS can develop in patients with asthma and that CSS might be associated with specific asthma treatments, the National Heart, Lung, and Blood Institute, the National Institute of Allergy and Infectious Diseases, the Office of Rare Diseases, National Institutes of Health, and the US Food and Drug Administration jointly sponsored a workshop to consider interrelationships among CSS, asthma, and asthma therapeutics and to assess what is known about underlying mechanisms of CSS. Issues related to the criteria for defining and diagnosing CSS were reviewed, including the contemporary understanding that diagnostic biopsies need only reveal eosinophilic perivascular infiltrates and that asthma need not be present when CSS develops. From published reports and reports to the US Food and Drug Administration, treatment of patients with asthma with any of 3 cysteinyl leukotriene receptor antagonists, a 5-lipoxygenase inhibitor, and inhaled corticosteroids has been associated with CSS development. It is unknown whether these agents were eliciting CSS. A variety of physiologic and study design issues might lead to the reported associations of these drugs with CSS. Because many asthma patients receiving these therapies were able to diminish their systemic corticosteroid therapy, it is possible that incipient CSS was unmasked by lessened steroid use. The underlying pathophysiologic mechanisms of CSS, however, are unknown, and there is no means of identifying which patients with asthma might be at risk for CSS. Accordingly, investigations with the goals of defining the underlying pathophysiologic processes of CSS and establishing the relationships of asthma and its therapies to CSS are needed.

Adrenal Cortex Hormones↗

PubMed2005

Effects of seasonal climate forecasts and participatory workshops among subsistence farmers in Zimbabwe.

Improvements in the ability to model El Niño and other large-scale interannual climate variations have allowed for the development of seasonal climate forecasts, predicting rainfall and temperature anomalies for many places around the world. These forecasts have allowed developing countries to predict shortfalls in grain yields, with benefits for food security. Several countries communicate the forecasts to subsistence farmers, which could allow them to mitigate the effects of drought on their harvests by adapting their cropping decisions accordingly. However, it has not been demonstrated that subsistence farmers benefit from having access to the forecasts. Here we present evidence of subsistence farmers using the forecasts over multiple years to make different decisions and significantly improving their harvests when they do so. In a controlled study, farmers in Zimbabwe who reported adapting their farming methods to seasonal climate forecasts significantly improved their harvests over baseline amounts. Moreover, farmers who had attended a brief workshop and learned more about the forecasts were significantly more likely to use the forecasts than were farmers who learned of the forecasts through nonparticipatory channels.

Journal Article↗

PubMed2006

Bioethics in human nutrigenomics research: European Nutrigenomics Organisation workshop report.

As part of its work on setting standards and establishing guidelines for nutrigenomics research, the European Nutrigenomics Organisation (NuGO) is developing bioethical guidelines for those engaged in human nutrigenomics studies. A NuGO working group developed a set of draft guidelines addressing four areas: (1) information and consenting prior to a nutrigenomics study; (2) the generation and use of genotype information; (3) the establishment and maintenance of biobanks; (4) the exchange of samples and data. NuGO convened a workshop with a panel of invited external experts to assess the draft guidelines. The panel of experts confirmed that these areas are important and that the development of specific bioethical guidelines for nutrigenomics research would therefore enhance the application of established international guidelines in this field of biomedical research.

Biomedical Research↗

PubMed2004

Workshop on funding opportunities within the Food Standards Agency.

During this workshop, held as part of a joint Nutrition Society and Food Standards Agency (Agency) meeting on Micronutrient interactions and public health, several precepts for a successful funding application to the Agency were discussed. These precepts, many of which can be used as guiding principles for project proposals to other funding bodies, are summarised as follows: remember that the Agency only supports research that will help them formulate or change human food policy; read the research requirements document thoroughly and plan your project to answer the call; remember that the Agency issues contracts, not grants; your project will be just one project within a focused and coordinated programme; collaborative work is encouraged, but this type of approach is not a licence to double or treble your costs; write a one-page executive summary and attach it to the front of the form;the statistical basis for your experimental design and proposed statistical analysis of your results are important criteria in the evaluation of your proposal; your plans for dissemination and exploitation are very important;match your project duration against your research plan; abide by the Agency plan for quality assurance for the management of research; make full use of the programme adviser and the Agency policy contact and the 'feedback' stage to refine your scientific ideas in line with Agency policy.

Financing, Government↗

PubMedDate not supplied

International workshop: setting priorities in environmental epidemiology--report on a World Health Organization meeting.

Environmental epidemiology is a rapidly growing field. If the best use of resources is to be made, researchers should concentrate on issues identified as relevant to public health. The Rome Division of the WHO European Centre for Environment and Health organized a workshop to set priorities for research in this area. The meeting was attended by leading experts in the field. Each participant submitted a paper that addressed suggested priorities for research in his or her field of expertise. Using the working papers as a basis of discussion, working groups were formed to clarify priorities in air contamination, water contamination, and radiation and disasters. The participants agreed on the issues that require more research in the hope of avoiding the duplication of efforts and replications of studies on topics on which the evidence was judged sufficient to draw conclusions and to promote public health action. Research groups and funding agencies should use the priorities identified to focus their activities on public health issues and to use funds cost effectively.

Air Pollution↗

PubMed1977

A sexual-enhancement workshop: beyond group systematic desensitization for women's sexual anxiety.

This study investigated whether six women who previously had received 15 sessions of group systematic desensitization (SD) for their sexual anxiety would report additional treatment gains from participation in a sexual-enhancement workshop with their partners. After group SD six couples participated in six, 1 1/2 hour weekly group sessions. The women reported a significant increase in marital adjustment and a significant decrease in sexual anxiety. A significant decrease was found in the women's sexual nonresponsiveness as perceived by their partners. Future studies should (1) contrast the effects of group SD with women alone versus couple group treatment, (2) determine which treatment components are most influential for defined subject types, and (3) obtain data on men's sexual functioning.

Anxiety↗

PubMed1990

Assessment of AIDS-related cognitive changes: recommendations of the NIMH Workshop on Neuropsychological Assessment Approaches.

This article presents an extended (7-9 hours) and a brief (1-2 hours) battery designed to evaluate early cognitive changes associated with seropositive, asymptomatic persons. The battery was recommended by an NIMH Workgroup which was guided by 10 principles in its development. The domains assessed by the battery are: (1) Indicators of Premorbid Intelligence; (2) Attention; (3) Speed of Processing; (4) Memory; (5) Abstraction; (6) Language; (7) Visuoperception; (8) Constructional Abilities; (9) Motor Abilities; and (10) Psychiatric Assessment. Although the battery assesses a wide range of psychological functioning, specific emphasis has been placed on divided and sustained attention as well as speed of processing and retrieval from working and long-term memory. Descriptions of both the traditional clinical tests and tasks used in cognitive psychology are provided. Although the Workgroup strongly recommends the use of the extended battery in order to ensure the most sensitivity, it recognizes that there may be situations in which this is not possible. In order to increase the likelihood that neuropsychological tests will identify neurologically affected CDC Stage II and III seropositive individuals, the Workshop recommends that each patient's protocol be rated by two trained neuropsychologists using the same clinical criteria. The Workgroup also recommends that a concerted effort be made to incorporate data from the extended and the brief batteries in some central data bank.

AIDS Dementia Complex↗

PubMed1989

The stimulated recall technique: a qualitative evaluation of an in-service workshop.

In order to provide more useful and relevant evaluation data of in-service education events, the authors have adapted a stimulated recall technique used in qualitative research. The procedures and some of the data collected from the pilot test of a Death Awareness Workshop are reported in this article. The evaluation procedures themselves appear to have some unexpected educational benefits.

Attitude to Death↗