scholarly journals Building research capacity through programme development and research implementation in resource-limited settings - the Ipabalele study protocol: observational cohort studies determining the effect of HIV on the natural history of cervical cancer in Botswana

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e031103 ◽  
Author(s):  
Surbhi Grover ◽  
Nicola Zetola ◽  
Doreen Ramogola-Masire ◽  
Memory Bvochora-Nsingo ◽  
Allison F Schnader ◽  
...  

IntroductionThe global burden of cancer continues to increase in low- and middle-income countries, particularly in sub-Saharan Africa (SSA). Botswana, a middle-income country in SSA, has the second highest prevalence of HIV worldwide and has seen an increase in human papillomavirus (HPV)-associated cervical cancer over the last decade in the setting of improved survival of HIV-infected women. There is an urgent need to understand more clearly the causes and consequences of HPV-associated cervical cancer in the setting of HIV infection. We initiated the Ipabalele (‘take care of yourself’ in Setswana) programme to address this need for new knowledge and to initiate long-term research programme capacity building in the region. In this manuscript, we describe the components of the programme, including three main research projects as well as a number of essential cores to support the activities of the programme.Methods and proceduresOur multidisciplinary approach aims to further current understanding of the problem by implementing three complementary studies aimed at identifying its molecular, behavioural and clinical determinants. Three participant cohorts were designed to represent the early, intermediate and late stages of the natural history of cervical cancer.The functional structure of the programme is coordinated through programmatic cores. These allow for integration of each of the studies within the cohorts while providing support for pilot studies led by local junior investigators. Each project of the Ipabalele programme includes a built-in capacity building component, promoting the establishment of long-lasting infrastructure for future research activities.Ethics and disseminationInstitutional review board approvals were granted by the University of Pennsylvania, University of Botswana and Ministry of Health and wellness of Botswana. Results will be disseminated via the participating institutions and with the help of the Community Advisory Committee, the project’s Botswana advisory group.

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Ann-Marie Chapman ◽  
Marieke Schurer ◽  
Laure Weijers ◽  
Amer Omar ◽  
Hiba Lee ◽  
...  

Abstract Background Non-dystrophic myotonias (NDMs) comprise muscle chloride and sodium channelopathies due to genetic defects of the CLCN1- and SCN4A-channels. No licensed antimyotonic treatment has been available until approval of mexiletine (NaMuscla®) for adult patients by the EMA in December 2018. This Delphi panel aimed to understand how outcomes of the pivotal phase III Mexiletine study (MYOMEX) translate to real world practice and investigate health resource use, quality of life and the natural history of NDM to support economic modelling and facilitate patient access. Methods Nine clinical experts in treating NDM took part in a two-round Delphi panel. Their knowledge of NDM and previous use of mexiletine as an off-label treatment prior to NaMuscla’s approval ensured they could provide both qualitative context and quantitative estimates to support economic modelling comparing mexiletine (NaMuscla) to best supportive care. Consensus in four key areas was sought: healthcare resource utilization (HRU), treatment with mexiletine (NaMuscla), patient quality of life (QoL), and the natural history of disease. Concept questions were also asked, considering perceptions on the feasibility of mapping the validated Individualized Neuromuscular Quality of Life (INQoL) instrument to the generic EQ-5D™, and the potential impact on caregiver QoL. Results Consensus was achieved for key questions including the average long-term dosage of mexiletine (NaMuscla) in practice, the criteria for eligibility of myotonia treatment, the clinical importance of QoL outcomes in MYOMEX, the higher proportion of patients with increased QoL, and the reduction in the need for mental health resources for patients receiving mexiletine (NaMuscla). While consensus was not achieved for other questions, the results demonstrated that most experts felt mexiletine (NaMuscla) reduced the need for HRU and was expected to improve QoL. The QoL mapping exercise suggested that it is feasible to map domains of INQoL to EQ-5D. Points of interest for future research were identified, including that mexiletine (NaMuscla) may slow the annual decrease in QoL of patients over their lifetime, and a significant negative impact on QoL for some caregivers. Conclusions This project successfully provided data from an informed group of clinical experts, complementing the currently available clinical trial data for mexiletine (NaMuscla) to support patient access decisions.


2011 ◽  
Vol 12 (11) ◽  
pp. 986 ◽  
Author(s):  
Karl Ulrich Petry

eLife ◽  
2019 ◽  
Vol 8 ◽  
Author(s):  
Julia Fischer ◽  
James P Higham ◽  
Susan C Alberts ◽  
Louise Barrett ◽  
Jacinta C Beehner ◽  
...  

Baboons, members of the genus Papio, comprise six closely related species distributed throughout sub-Saharan Africa and southwest Arabia. The species exhibit more ecological flexibility and a wider range of social systems than many other primates. This article summarizes our current knowledge of the natural history of baboons and highlights directions for future research. We suggest that baboons can serve as a valuable model for complex evolutionary processes, such as speciation and hybridization. The evolution of baboons has been heavily shaped by climatic changes and population expansion and fragmentation in the African savanna environment, similar to the processes that acted during human evolution. With accumulating long-term data, and new data from previously understudied species, baboons are ideally suited for investigating the links between sociality, health, longevity and reproductive success. To achieve these aims, we propose a closer integration of studies at the proximate level, including functional genomics, with behavioral and ecological studies.


2018 ◽  
Vol 17 (1) ◽  
pp. 28-33 ◽  
Author(s):  
G. M. Volgareva

Up till now human papillomaviruses (HPV) draw attention of biologists and clinicians owing mostly to the fact that some members of this group cause cervical cancer in women. However it is clear that both women and men take part in HPV distribution throughout population. Data get accumulated on peculiarities of HPV natural history in men when compared with women, as well as on capability of oncogenic HPV to induce cancer in several male organs. The present paper is an attempt to synthesize literature data on specific features of HPV natural history in men. Elucidation of these features is important for working out efficient approaches for prevention of HPV-associated malformation with regard to gender specificities.


2019 ◽  
Vol 2019 ◽  
pp. 1-9
Author(s):  
Zhenhua Wang ◽  
Qiang Zhang ◽  
Bin Wu

Objective. This study constructs, calibrates, and verifies a mathematical simulation model designed to project the natural history of ESCC and is intended to serve as a platform for testing the benefits and cost-effectiveness of primary and secondary ESCC prevention alternatives.Methods. The mathematical model illustrates the natural history of ESCC as a sequence of transitions among health states, including the primary health states (e.g., normal mucosa, precancerous lesions, and undetected and detected cancer). Using established calibration approaches, the parameter sets related to progression rates between health states were optimized to lead the model outputs to match the observed data (specifically, the prevalence of precancerous lesions and incidence of ESCC from the published literature in Chinese high-risk regions). As illustrative examples of clinical and policy application, the calibrated and validated model retrospectively simulate the potential benefit of two reported ESCC screening programs.Results. Nearly 1,000 good-fitting parameter sets were identified from 1,000,000 simulated sets. Model outcomes had sufficient calibration fit to the calibration targets. Additionally, the verification analyses showed reasonable external consistency between the model-predicted effectiveness of ESCC screening and the reported data from clinical trials.Conclusions. This parameterized mathematical model offers a tool for future research investigating benefits, costs, and cost-effectiveness related to ESCC prevention and treatment.


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