Scientific Interest Groups Research Articles

Roll-out and effectiveness of HIV pre-exposure prophylaxis in France: An overview

Oral HIV pre-exposure prophylaxis (PrEP) has been available and fully reimbursed for people at high risk of sexually acquired HIV infection in France since January 2016. To evaluate the roll-out of PrEP use in France and its real-life effectiveness. The main results of two previously published studies were presented at the second e-congress of the EPI-PHARE scientific interest group on pharmacoepidemiology and public decision support held in June 2022, and are reported in this article. Two studies were carried out using the French National Health Data System (SNDS) covering 99% of the French population. A first study aimed to evaluate the roll-out of PrEP use in France from its implementation until June 2021, globally over the entire study period, including an assessment of the impact of the coronavirus disease 2019 (COVID-19) pandemic that started in February 2020 in France. A second study using a nested case-control design was conducted in a cohort of men at high risk of HIV acquisition included between January 2016 and June 2020 to assess the effectiveness of PrEP in the real world. As of 30 June 2021, a total of 42159 people had initiated PrEP in France. Initiations increased steadily until February 2020, then slowed down sharply from the start of the COVID-19 pandemic and resumed from the first half of 2021. PrEP users were overwhelmingly men (98%), with an average age of 36 years, living in a large urban area (74%), and of whom a minority (7%) were socioeconomically disadvantaged. Throughout the study period, the level of PrEP maintenance from one semester to the next was high (80-90%). However, for 20% of PrEP initiators, no prescription renewals were recorded during the first six months, suggesting a substantial proportion of early treatment discontinuation. A minority (21%) of PrEP renewal prescriptions were made by private practitioners. Among 46706 men at high risk of HIV infection, 256 patients identified with HIV infection were matched with 1213 controls. PrEP was used by 29% of cases and 49% of controls. Overall, PrEP effectiveness reached 60% (95% confidence interval 46% to 71%), and was increased in people with high PrEP use (93% (84% to 97%)), or after excluding periods of treatment discontinuation (86% (79% to 92%)). PrEP effectiveness was significantly reduced in people under 30 years of age (26% (-21% to 54%)) and in socioeconomically disadvantaged people (-64% (-392% to 45%)), for whom low PrEP uptake rates or high PrEP discontinuation rates were frequently observed. PrEP roll-out has been strongly impacted by the COVID-19 pandemic in France. Although it has been substantial among men who have sex with men, additional measures are needed to expand access to PrEP to all other population groups that could benefit from it. Promoting adherence to PrEP (especially among young people and the socioeconomically disadvantaged) will be essential to ensure a higher level of PrEP effectiveness, which has been shown to be lower in real-life settings than in clinical trials.

Neurodevelopmental disorders (NDD) without boundaries: research and interventions beyond classifications.

On June 2022, the 2nd Webinar "Neurodevelopmental Disorders (NDD) without boundaries took place at the Imagine Institute in Paris and was broadcasted live and in replay. The aim of this webinar is to address NDD in a dimensional rather than in a categorical approach. Several speakers were invited to present their researches on the subject. Classifications in NDD were discussed: irritability in NDD, involvement of the immune system in neurodevelopment, nutrition and gut microbiota modulate brain inflammation and neurodevelopment, co-occurring conditions in autistic adolescents and adults without intellectual disability. Classifications in psychiatric disorders were asked: mapping the effect of genes on cognition and autism risk, epigenetics and symptomatic trajectory in neurodevelopmental disorders, the autism-schizophrenia continuum in two examples: minor neurological signs and EEG microstates, the cerebellum in schizophrenia and autism: from imaging to intervention perspectives. Both genetic and environmental factors, along with clinical and imaging features, argue toward a continnum between NDD but also with adult psychiatric presentations. This new paradigm could modify the therapeutic strategy, with the development of large-spectrum treatments or new psychotherapies addressing co-occuring symptoms. The complexity and the heterogeneity of NDD apply well to the next scientific and political challenges: developing international convergence to push back the frontiers of our knowledge. This article is a summary of the 2nd webinar "Neurodevelopmental Disorders (NDD) without boundaries: research and interventions beyond classifications" sponsored by the French National Academy of Medicine, the autism and neurodevelopmental disorders scientific interest group (GIS), the International Research Network Dev-O-Psy and the French Institute of Psychiatry (GDR3557). Oral presentations are available as a replay on the following website (in French): https://autisme-neurodev.org/evenements/2022/04/12/tnd-sans-frontieres-la-recherche-et-les-interventions-au-dela-des-classifications/ .

Partnering to Advance Health Equity and a Welcome Opportunity to Gather: Proceedings From the 28th Annual Conference of the Health Care Systems Research Network.

In April 2022, the Health Care Systems Research Network (HCSRN) - a consortium of 20 research institutions affiliated with large health systems spread across the United States (and one in Israel) - held its 28th annual conference in Pasadena, California, with 275 researchers, health care colleagues, and external academic partners in attendance. With a conference theme of "Promoting Collaboration and Partnerships to Advance Health Equity," the scientific program was assembled by a multisite planning committee with input from representatives of informal local host Kaiser Permanente Southern California. Objectives of the annual conference are to showcase scientific findings from HCSRN projects and to spur collaboration on research initiatives that improve health and health care for individuals and populations. To those ends, the NIH Pragmatic Trials Collaboratory sponsored a preconference workshop on the essentials of embedded pragmatic clinical trials, and more than a dozen scientific interest groups and active research project teams held ancillary sessions throughout the conference. This welcome opportunity for network members to meet in-person followed a 2-year hiatus necessitated by the COVID-19 pandemic, during which HCSRN conference proceedings were conducted through virtual and written communication platforms.

Current status of clinical outcome measures in inclusion body myositis: a systematised review.

Sporadic inclusion body myositis (IBM) is a debilitating idiopathic inflammatory myopathy (IIM) which affects hand function, ambulation, and swallowing. There is no approved pharmacological therapy for IBM, and there is a lack of suitable outcome measure to assess the effect of an intervention. The IBM scientific interest group under IMACS reviewed the previously used outcome measures in IBM clinical studies to lay the path for developing a core set of outcome measures in IBM. In this systematised review, we have extracted all outcome measures reported in IBM clinical studies to determine what measures were being used and to assess the need for optimising outcome measures in IBM. We found 13 observational studies, 17 open-label clinical trials, and 15 randomised control trials (RCTs) in IBM. Six-minute walk distance, IBM-functional rating scale (IBM-FRS), quantitative muscle testing, manual muscle testing, maximal voluntary isometric contraction testing, and thigh muscle volume measured by MRI were used as primary outcome measures. Twelve different outcome measures of motor function were used in IBM clinical trials. IBM-FRS was the most used measure of functionality. Swallowing function was reported as a secondary outcome measure in only 3 RCTs. There are inconsistencies in using outcome measures in clinical studies in IBM. The core set measures developed by the IMACS group for other IIMs are not directly applicable to IBM. As a result, there is an unmet need for an IBM-specific core set of measures to facilitate the evaluation of new potential therapeutics for IBM.

Advancing equity through strengthening research on health and well-being of Asian American, Native Hawaiian, and Pacific Islander

The National Institutes of Health’s Asian American, Native Hawaiian and Pacific Islander Health Scientific Interest Group (NIH AANHPI-HSIG) provides a viewpoint on developing approaches to enhance research on health and wellbeing for Asian American, Native Hawaiian, and Pacific Islander ethnic populations, in order to advance racial equity amongst such populations.

C2SI corpus: a database of speech disorder productions to assess intelligibility and quality of life in head and neck cancers

Within the framework of the Carcinologic Speech Severity Index (C2SI) INCa Project, we collected a large database of French speech recordings aiming at validating Disorder Severity Indexes. Such a database will be useful for measuring the impact of oral and pharyngeal cavity cancer on speech production. It will permit to assess patients’ quality of life after treatment. The database is composed of audio recordings from 134 sessions and associated metadata. Several intelligibility and comprehensibility levels of speech functions have been evaluated. Acoustics and prosody have been assessed. Perceptual evaluation rates from both naive and expert juries are being produced. Automatic analyzes are being carried out. It is intended to provide speech therapists and physicians with objective tools, which take into account the intelligibility and comprehensibility of patients which received cancer treatment (surgery and/or radiotherapy and/or chemotherapy). The aim of this paper is to justify the necessity of such a corpus and to present its data collection. This C2SI corpus will be available to the scientific community through the Scientific Interest Group Parolotheque.

Announcing the ACA Best Practices for Data Analysis and Archiving Scientific Interest Group

Announcing the ACA Best Practices for Data Analysis and Archiving Scientific Interest Group

Using the HCSRN Private Web Portal to Support Collaboration: Project-Based Experiences and User Insights

Background/Aims: The Health Care Systems Research Network launched a password-secured web portal (HCSRN Portal) in October 2014 at www.hcsrn.org/share/. The HCSRN Portal allows project teams, scientific interest groups and committees to maintain online work and archival space, with access restricted to project-specific staff. The HCSRN Portal enables the manager of each private portal site to add or remove a variety of functions including a document library, calendar, wiki, blog, discussion board, data lists (e.g. action logs, contact directories, etc.) and quick links. To date, eight collaborative projects have established private project-specific sites within the HCSRN Portal. We describe the basic functionality available in the portal, functionality most used by project teams, and user experience and satisfaction.

D3-1: HMO Research Network Rural Health Scientific Interest Group (Rural Health-SIG): Highlights from Four Member Sites and Opportunities for Collaboration

Background/Aims Compared to their urban counterparts, rural residents have persistent health disparities and remain medically underserved. However as shown last year by the Rural Health SIG, many diseases and health conditions strongly impact rural and urban dwellers (Copeland et al, HMORN 2013 PS3-47). To put this in perspective, we describe the member populations and highlight the research specialties from four of seven Rural Health-SIG sites with a substantial number of members living in rural areas.

Embedded research to improve health: the 20th annual HMO Research Network conference, March 31-April 3, 2014, Phoenix, Arizona.

The HMO Research Network (HMORN) is a member-based network of 17 research centers affiliated with not-for-profit health care systems across the US with an eighteenth site in Israel. These health care organizations all provide comprehensive medical services to enrolled members and patients. Though not all HMORN members are Health Maintenance Organizations (HMOs) most are integrated delivery systems, and most of the member research centers reside within the organizational structure of the health system itself. This ‘embeddedness’ of the research center within the health plan creates a natural opportunity for direct interactions between health care leaders, clinicians and staff, patients/members, and research investigators from HMORN member sites. Both organizational and member stakeholders are essential collaborators in the new model of patient and provider engaged research envisioned by the National Institutes of Health (NIH) Health Care Systems Research Collaboratory,1 the Patient Centered Outcomes Research Institute (PCORI),2 as reflected in recent funding opportunities published by NIH, PCORI and the Agency for Healthcare Research and Quality (AHRQ).3,4,5,6,7,8 The theme of the 2014 HMORN annual conference, Embedded Research to Improve Health, was especially timely as the US research environment shifts toward increased stakeholder engagement. The conference included several new features: a poster contest, an award for the best thematic abstract, an investigator development program, project and scientific interest group working meetings, and numerous sessions devoted to sharing methods, best practices, processes, and other information to engage a variety of stakeholders in research and research processes. The 20th annual conference of the HMORN was held in Phoenix, Arizona between March 31 and April 3, 2014. The event was hosted by Kaiser Permanente Colorado with Heather S. Feigelson, PhD, MPH as scientific chair and Sarah Madrid, MA ABD PhD as conference manager. The event marked two decades of sustained and productive collaboration across member sites. The State of the Network Address by the 2013–2014 HMORN Governing Board chair, Dr. John Steiner of Kaiser Permanente Colorado, celebrated this longevity, identified essential elements of network sustainability, and discussed the skills necessary to practice “leadership without control” in decentralized, collaborative research environments such as the HMORN. The keynote address was delivered by Patricia Gabow, MD, the recently retired chief executive officer (CEO) of Denver Health, a nationally prominent, integrated safety-net delivery system. She discussed research-operations partnerships, and presented the Denver Health experience in using Lean9 approaches to improve organizational efficiency and control costs. Senior staff from PCORI offered two luncheon addresses and participated in panel sessions. Four early career investigators awardees shared findings on studies of patient satisfaction, lifetime cancer care costs, breast cancer prevention, and nursing home discharge outcomes. Two poster sessions, numerous sessions for research administrators and IRB officials, and opportunities for informal networking rounded out this year’s event.

PS3-47: Rural Health Research Initiative in the HMORN: A New Scientific Interest Group

Background/Aims Rural health describes a set of health issues, health care challenges and research priorities driven by a single geo-demographic factor: low population density. Rural areas compared to urbanized areas have fewer providers per capita, longer distance to care, lower socioeconomic status, higher rates of untreated illness, greater exposure to agricultural chemicals, and higher rates of alcohol use, fatal motor vehicle crashes, and suicide. Accessing clinical data for large numbers of rural residents can be challenging. To meet this challenge, seven sites formed the HMORN Rural Health Scientific Interest Group (SIG).

(Bio-)remediation of VCHC contaminants in a Technosol under unsaturated conditions

The remediation of dense non-aqueous phase liquids has always been a concern of both public and scientific interest groups. In this research work a modified physical concept of (bio)remediation of a volatile chlorinated hydrocarbon (VCHC) contamination was elaborated under laboratory conditions and modeled with HYDRUS-2D. In field dechlorination is influenced by both physicochemical and hydraulic properties of the substrate, e.g. texture, pore size distribution, pore liquid characteristics, e.g. viscosity, pH, surface tension, and dependent on the degree of saturation of the vadose zone. Undisturbed soil cores (100cm³) were sampled from a Spolic Technosol. Considering hydraulic properties and functions, unsaturated percolation was performed with vertically and horizontally structured samples. VCHC concentrations were calculated prior, during, and after each percolation cycle. According to laboratory findings, microemulsion showed the most efficient results with regard to flow behavior in the unsaturated porous media and its accessibility for bacteria as nutrient. The efficiency of VCHC remediation could be increased by the application of a modified pump-and-treat system: the injection of bacteria Dehalococcoides ethanogenes with microemulsion, and extraction at a constant matric potential level of -6kPa. Achieved data was used for HYDRUS-2D simulations, modeling in situ conditions, demonstrating the practical relevance (field scale) of performed unsaturated percolation (core scale), and in order to exclude capillary barrier effects.

PS2-08: "I Didn't Know They Did That!" Discovering and Maximizing the Capacity of the HMO Research Network

;Background/Aims: The HMO Research Network (HMORN) is a national consortium of research centers working within or in close partnership with integrated health systems. HMORN sites conduct public domain health research on a wide range of diseases and cross-cutting topics. While the HMORN has established large topical research networks, the HMORN’s collective capacity remains relatively untapped for the majority of topics. We illustrate the variation and concentration of topical and methodological expertise across the Network, and suggest ways the HMORN could leverage existing capacities more fully. Methods: Written surveys indicating ongoing local research capacity were completed by 14 HMORN sites in the 2nd quarter of 2011. Sites classified 45 research topics as “Powerhouse area” (multiple studies per year, particular depth or breadth exists), “Some Expertise” or “Not an emphasis.” These survey data were collected, synthesized and tabulated by the HMO Collaboratory team. We will survey the remaining 5 HMORN sites prior to HMORN 2012 and report capacity information for the entire Network. Results: Eleven of the 14 delivery systems (78.6%) directly owns or partners closely with an insurance entity; HMOs were a major component of these systems. Special research capacities of HMORN centers include facilities to fill prescriptions, facilities to perform research lab tests, survey departments, and dedicated research clinics. While significant capacity exists across the Network in topics with well established consortia (e.g., cancer, cardiovascular disease, infectious disease), capacity existed in multiple centers for every topic surveyed. Multiple HMORN centers reported “powerhouse areas” on topics around which the HMORN has not significantly mobilized. These included alcohol and drug abuse, arthritis, neurological disorders, oral health, aging, health disparities, pain management, pediatrics, and reproductive health among others. Discussion: Many opportunities for expanding multicenter research to new areas exist in the HMORN. Continuing to improve documentation of where expertise exists in the Network (both organizationally and individually) would help connect HMORN investigators to funding agencies, to new opportunities, and to one another. Additional scientific interest groups are one potential strategy to mobilize researchers with topical affinities and position the HMORN to expand its portfolio into new research topics in the

Hydroacoustic monitoring of a salt cavity: an analysis of precursory events of the collapse

Abstract. One of the main features of "post mining" research relates to available methods for monitoring mine-degradation processes that could directly threaten surface infrastructures. In this respect, GISOS, a French scientific interest group, is investigating techniques for monitoring the eventual collapse of underground cavities. One of the methods under investigation was monitoring the stability of a salt cavity through recording microseismic-precursor signals that may indicate the onset of rock failure. The data were recorded in a salt mine in Lorraine (France) when monitoring the controlled collapse of 2 000 000 m3 of rocks surrounding a cavity at 130 m depth. The monitoring in the 30 Hz to 3 kHz frequency range highlights the occurrence of events with high energy during periods of macroscopic movement, once the layers had ruptured; they appear to be the consequence of the post-rupture rock movements related to the intense deformation of the cavity roof. Moreover the analysis shows the presence of some interesting precursory signals before the cavity collapsed. They occurred a few hours before the failure phases, when the rocks were being weakened and damaged. They originated from the damaging and breaking process, when micro-cracks appear and then coalesce. From these results we expect that deeper signal analysis and statistical analysis on the complete event time distribution (several millions of files) will allow us to finalize a complete typology of each signal families and their relations with the evolution steps of the cavity over the five years monitoring.

C-A4-01: Providing Care for Cancer Survivors in Integrated Delivery Systems: An Assessment of Current Practices and Future Opportunities

Jessica Chubak, PhD1, Clarissa Hsu, PhD2, Leah Tuzzio, MPH1, Beth Kirlin, BA1 and Larissa Nekhlyudov, MD, MPH3,4 1Group Health; 2Group Health Research Institute; 3Harvard Medical School; 4Harvard Vanguard Medical Associates

PS1-15: What has the HMO Research Network Done for You, Lately? How the Network is Responding to Investigators' Needs

In late 2007, HMORN leaders surveyed investigators to learn how to better foster and support multi-site projects. This poster recaps survey results, reviews 2008 progress to address findings, and summarizes ongoing efforts. Methods: The 2007 HMORN investigators’ survey was anonymously administered via www.surveymonkey.com. Directors emailed the survey link to their faculty, including one email reminder. A total of 279 surveys were reportedly distributed. 2007 Survey Results: Surveys were completed by 161 investigators (58%) from 14 of 15 Centers. Full/senior Investigators represented 49% of responders, 19% were associate and 24% assistant level researchers. Years of experience averaged 15. The top 5 features investigators identified that would make multi-site research more attractive were: ways to find and connect with colleagues (32%); central or streamlined IRB (12%); more opportunities and better dissemination of them (11%); coordinated budget development and grant administration (10%); boilerplate, website, guides, clear processes (9%). Investigators also shared the top five ways the HMORN could assist investigators. These were: PI directory with bios, virtual scientific interest groups, streamlined grants and contracts administration, web based guides and resources and improved communications. 2008 Progress Made: The Network responded to investigator priorities in 2008 in a number of ways, and there are now many more resources available than when the survey was conducted. A directory of Investigators by site and research interests is now on the HMORN website with links to biographical information on external Center websites. Search features will be added to the PI Directory in 2009. An SOP for streamlined, facilitated IRB review of low-risk, data only studies was adopted across the Network. Templates for coordinating budget and grant development are available as well as a variety of boilerplate, guides, toolkits and best practices. The Network is working to finalize template subcontract and data use agreements and expand functionality of the Network’s website. To support and maintain all of this, every HMORN Center has made a financial commitment to the Network, beginning in 2009. Next Steps: With the funding of the 2009 HMORN Operating Budget, the Network is continuing to implement improvements to the website, administrative resources, VDW, communications and more.

Compte rendu du 18 e colloque de l'Association des diatomistes de langue française

The 18th colloquium of the Association of French speaking diatomists (ADLaF) was held in Nice (France), at the ‘Conseil Général des Alpes Maritimes’ from September 14–17, 1999. This colloquium gathered more than seventy scientists of sixteen different nationalities, mainly from French-speaking countries (Belgium, Canada, France, Luxembourg, Switzerland), but also from other countries such as Germany, Hungary, Italy, Mexico, Morocco, Poland, Portugal, Romania, Spain, Tunisia and Ukraine. A total of 29 oral communications and 15 posters were presented on various topics: taxonomy, fossil diatoms, marine and freshwater diatoms (diatom communities and biodiversity, ecology of diatoms and water quality assessment). Three round tables were organised on the following topics: ‘Diatoms and chlorophyll pigments’, ‘Databases’ and ‘Scientific interest group on diatoms from continental waters’. During the field-trip, 30 participants collected epilithic diatoms in the river Loup (Alpes Maritimes) in the framework of an intercalibration exercise of the ‘Indice Biologique Diatomées’ (IBD) which is in the process of being normalised in France. The last day of the colloquium was devoted to observations with the microscope and to the presentation of a library of digitised diatom pictures.

A Comparison of EEG Biofeedback and Psychostimulants in Treating Attention Deficit/Hyperactivity Disorders

The study compared treatment programs with EEG biofeedback or stimulants as their primary components. An EEG group (EEG) was matched with a stimulant group (MED) by age, IQ, gender and diagnosis. The Test of Variables of Attention (TOVA) was administered pre and post treatment. EEG and MED groups improved (p 0.3) on TOVA change scores. The EEG biofeedback program is an effective alternative to stimulants and may be the treatment of choice when medication is ineffective, has side effects, or compliance is a problem. The purpose of the study was to examine the efficacy of 20 sessions of EEG biofeedback in reducing AD/HD symptoms and to compare the results with those obtained with psycho stimulant medication. Psychostimulants are the most widely used treatment for AD/HD (Barkley, 1990). In order to be a widely accepted alternative to medication, EEG biofeedback must be able to produce equivalent symptom reduction. Reports documenting the use of EEG biofeedback in the treatment of attention deficit hyperactivity disorder (AD/HD) began to appear in the literature in the mid 1970's (Lubar & Shouse, 1976). In recent years the use of this treatment has become more widespread and has received increasing attention from the professional community and the public. The increased professional interest may be due to a number of factors including the reported effectiveness of the treatment, the availability of relatively inexpensive, high quality, quantitative EEG equipment, an expanding number of opportunities for training in the use of EEG biofeedback, and the emergence of scientific interest groups that have facilitated the promulgation of information in this area. With increasing exposure, EEG biofeedback has been subject to greater scrutiny from the biofeedback community as well as professions dealing with the diagnosis and treatment of AD/HD. Barkley (1992, p. 10) concluded that there is not enough evidence from well controlled scientific studies at this time to support the effectiveness of EEG biofeedback for AD/HD children. He criticized studies that used small numbers of subjects, lacked appropriate control groups, used diagnostic criteria that were unspecified or ambiguous, confounded treatment effects by using multiple interventions (e.g., academic tutoring, self control training, etc.), and employed outcome measures susceptible to practice and/or placebo effects. Some of Barkley's criticisms are valid (Lubar, 1993) and are being addressed by controlled studies using larger numbers of subjects. Linden, Habib, & Radcjevic (in press), using a waiting list control, demonstrated that 40 sessions of EEG biofeedback resulted in significant increases in IQ and reductions in

The role of scientific advisers in the strategic defense initiative

This paper compares the strategic and technical debate about the Strategic Defense Initiative (SDI) to the ABM debate of 1968–1972. One major difference is the commitment of the President to support SDI; those who apparently influenced the President on this matter came from outside the ranks of his usual military and diplomatic advisers. In Congress, science advisers are less influential now than they were in the past, due to the strengthening of Congressional staffs and agencies, the growth of scientific interest groups, and the dimished novelty of their appearances in Congress. In light of the history of the ABM, the US should be careful to ensure that the financial and technical commitments to SDI do not automatically imply a commitment to deploy a strategic defense system.