BackgroundThe time constraint of NHS care is difficult to reconcile with the comprehensive neurological assessment required to complete a mandatory EDSS for NHS England funded disease modifying ...treatment of people with multiple sclerosis (pwMS). We report our experience with parametric data collection in order to (i) inform DMT decisions and (ii) improve characterisation for recruitment of pwMS in clinical trials.MethodsWe implemented a battery consisting of the symbol digit modality test, 9-hole-peg-test, 25ft walking test and ABILHAND. pwMS were encouraged to sign up to the MS Register to record patient reported outcomes and ‘webEDSS’. Data from the MS Register and BartsMS Database were electronically linked.Results334 pwMS at different disease stages (EDSS 0–8.5) have been assessed at least annually. Of these, 64% had a relapsing and 36% a progressive disease course. Clinically meaningful data was obtained and displayed in an engaging portal for interpretation by the clinical team and pwMS.ConclusionIt’s feasible to implement multidimensional monitoring of pwMS to benefit (i) management of pwMS and (ii) trial recruitment, particularly for pwMS with EDSS >6.5. Longitudinal follow-up and data analysis is underway. Standardisation of a simple, regularly collected, dataset may improve performance assessment between centres.
Corticobasal degeneration (CBD) is a rare progressive neurodegenerative disease. Our primary aim is to investigate how clinical and biological features can help explain the varying pathology that ...underlies corticobasal syndrome (CBS) and to define the markers of pathological CBD. The secondary aim is to establish a cohort of patients with clinically well-defined CBS that will be available for future therapeutic and clinical studies. The ABN BNSU is a source of recruitment of patients with CBS to the PROSPECT study. Eligible patients are notified to the study team monthly by ABN members. Patients are provided with a permission to contact form. Following informed consent, patients provide blood samples for genetic analysis and cell lines and complete study questionnaires. Patients can participate remotely or at their local study site. We have received 22 BNSU referrals from 22 consultants over 5 months (mean 4.5/month). So far we have received 1 permission to contact form from a patient who is being recruited to study. The BNSU is an invaluable source of referrals for patients with rare diseases from across the UK. There is a 4 month delay from initial contact to return of reply forms and we will investigate ways to streamline the recruitment process.
Rationale: Macroscopic pressure-volume (P-V) curves are the result of microscopic nonlinear phenomena that ultimately give rise to the saturation of the P-V curve. ...linking microscopic dynamics, ...such as progressive fiber recruitment, could provide insight on the changes which occur in disease and ageing. ...it is often stated that Oqq divided by R should increase monotonically across R for 2 alveolar stability; however, based on Eq.1, it is rather the integral of Oqq over the cross-sectional area divided by R that must be sufficiently monotonic in order for the P-V curve to saturate and the alveoli to stabilize.
AimOur aim was to increase our patient and actor database for the training courses we run at HILS and define a recruitment process. We planned to do this through the trust funded Pioneer Team Academy ...as they gave expert knowledgeable advice with each step of our project, as well as financial support.MethodWe attempted to build interest in the following ways: Created posters, flyers and a pull-up, then distributed them throughout the hospital and local colleges. Visited medical outpatients and spoke with those visiting the clinics. Visited school careers fairs to discuss the project with prospective students. For those who signed up we created a basic induction which included a presentation, tour of the facility and an introduction to SimMan. Once completed, they were allowed to observe scenarios until they felt ready to act for HILS.Abstract 10–14 Figure 1ResultsWorking as the Pioneer Project team we have been very successful in achieving the majority of our objectives so far. Not only have we been able to recruit a sufficient number of actors and nurses to fill all the courses we are hosting this year, we are also oversubscribed with interest and continue to receive enquiries on a regular basis from prospective actors. This highlights the success of the promotional materials used for our campaign. We have attracted a higher calibre of actors through this programme as we recruited already professional actors, and have a much larger pool from which to select the most appropriate actor depending upon the course running. In order to continue to engage the actors we have implemented a policy of awarding certificates of recognition which we feel makes the programme mutually beneficial. Overall, not only has the project helped with actor and patient recruitment but it has also heightened the level of interest in what we offer as a department as a whole and the courses which we run.ConclusionIn order to develop and extend the project we have set objectives for the future. For the actor recruitment we aim to devise a full and comprehensive training programme which can be implemented. Within this programme we would like to design and develop the characters for each scenario so that the actors themselves are able to have input and are familiar with the roles they will undertake. For patient recruitment we wish to continue expanding the database so that we have sufficient numbers of patients available to allow us to take on extra courses and exams. To do this, we are working to establish a contact with a Consultant or Registrar within each of the main departments who will be able to help push recruitment in clinics and also triage the suitability of the patients being recruited.
The phenomenal growth of global pharmaceutical sales and the quest for innovation are driving an unprecedented search for human test subjects, particularly in middle- and low-income countries. Our ...hope for medical progress increasingly depends on the willingness of the world's poor to participate in clinical drug trials. While these experiments often provide those in need with vital and previously unattainable medical resources, the outsourcing and offshoring of trials also create new problems. In this groundbreaking book, anthropologist Adriana Petryna takes us deep into the clinical trials industry as it brings together players separated by vast economic and cultural differences. Moving between corporate and scientific offices in the United States and research and public health sites in Poland and Brazil,When Experiments Traveldocuments the complex ways that commercial medical science, with all its benefits and risks, is being integrated into local health systems and emerging drug markets.
Providing a unique perspective on globalized clinical trials,When Experiments Travelraises central questions: Are such trials exploitative or are they social goods? How are experiments controlled and how is drug safety ensured? And do these experiments help or harm public health in the countries where they are conducted? Empirically rich and theoretically innovative, the book shows that neither the language of coercion nor that of rational choice fully captures the range of situations and value systems at work in medical experiments today.When Experiments Travelchallenges conventional understandings of the ethics and politics of transnational science and changes the way we think about global medicine and the new infrastructures of our lives.
Larval recruitment, a critical component of population connectivity, has been under investigated compared to larval dispersal. We developed a backward‐in‐time Lagrangian particle tracking model to ...predict larval hatching locations and proposed a larval recruitment kernel, to quantify recruitment patterns. Combining field data and a hydrodynamic model, our backtracking model predicted Lake Whitefish (Coregonus clupeaformis) hatching locations in Lake Erie. We found a strong linear correlation (r = 0.95–0.98) between travel distance (i.e., distance along a trajectory) and pelagic larval duration (PLD), and a moderate correlation (r = 0.66–0.68) between linear distance (i.e., displacement) and PLD. This questions the wide use of PLD as a proxy for dispersal distance. We defined the recruitment kernel using the probability density function of the linear recruitment distance. Characteristics of the recruitment kernel, such as theoretical self‐recruitment, median‐recruitment distance, long‐distance recruitment, and openness convey significant information about population connectivity that are distinct from those derived using the well‐known dispersal kernel (e.g., theoretical local retention).
Plain Language Summary
The dispersal kernel has been widely and successfully applied to quantify dispersal patterns of plant seeds, insects and fish larvae. Due to the complexity of in situ observations tracking small‐sized larvae, forward‐in‐time Lagrangian particle tracking models have been widely applied to predict and quantify larval dispersal patterns, by releasing particles from the spawning/hatching region and estimating the dispersal kernel (i.e., the probability density function, p.d.f., of linear dispersal distance of particles). Whereas it remains a challenge to predict and quantify larval recruitment, which is another critical component of population connectivity, by releasing particles from every potential hatching region, and discriminating every recruit at the settlement sites. A backward‐in‐time particle tracking model was applied here to predict larval hatching locations by releasing particles at larval nursery locations. Based on the p.d.f. of the linear recruitment distance, a larval recruitment kernel was first proposed to quantify recruitment patterns in the case where spawning/hatching sources are unknown. The proposed recruitment kernel holds distinct ecological significance compared to the dispersal kernel. Characteristics of the recruitment kernel, for example, the self‐recruitment, is distinct from those of the dispersal kernel, for example, the well‐known local retention, providing important supplements to population connectivity research.
Key Points
Larval Whitefish sampled in Lake Erie's western basin were backtracked to hatch in the western basin, while not around the Bass Islands
A larval recruitment kernel was proposed to quantify larval recruitment patterns and allow for a theoretical measure of self‐recruitment
Moderate correlation between pelagic larval duration (PLD) and linear distance questions the use of PLD as a proxy for dispersal potential
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