Socioeconomic Profile Research Articles

Socioeconomic profile pregnant women with Gestational and Congenital Syphilis in SC-Brazil

Objective: The study aimed to profile patients with gestational syphilis (GS) and congenital syphilis (CS), presenting the scenario on incidence and the effectiveness of actions in three municipalities in Santa Catarina. Methodology: This was a descriptive, exploratory and retrospective research with a quantitative approach. The variables were obtained through the records of the Information System on Live Births (SINASC) and the Information System of Notifiable Diseases (SINAN) from 2017 to 2022. The data were arranged in tables and graphs, and the analysis was performed by means of relative and absolute frequency. Results: There were 331 cases of gestational syphilis and 25 cases of congenital syphilis reported. The study showed that 33.23% of the pregnant women were between 21 and 25 years old, 68.58% were white, 26.89% had completed high school, 92.45% lived in urban areas, all were "housewives", and 48.04% of the pregnant women's sexual partners were treated concomitantly with the pregnant woman. Regarding the characteristics of the patients with SC, 96.1% were diagnosed in the first weeks of life and 64% were hospitalized for treatment. Regarding the profile of the mothers of these patients, 52% were younger than 20 years old, 36% had incomplete High School, 96% had prenatal care, 36% had an adequate treatment regimen, and 56% of the sexual partners had no treatment. Conclusion: The results reflect a higher vulnerability due to the maternal profile found in the social context of syphilis, bringing health risks due to the lower access to information and the higher risk of disease transmission.

Long-term care insurance in Italy: medico-legal and socio-economic profiles.

Long-term care insurance (LTCI) plays a crucial role in providing substantial aid in non-self-sufficient situations and complementing existing state protection mechanisms. With an aging population and increasing demand for healthcare services LTC policies have become indispensable. While individual LTCI policies face adoption challenges, group insurances offer a more streamlined alternative. However, realizing the full potential of these insurances necessitates targeted legislative intervention to improve accessibility and ensure sustainability. This article explores the evolution of LTCI policies in Italy, offering an overview of the current landscape and highlighting the socio-economic and medico-legal factors shaping the present scenario. By providing this analysis, we seek to offer insights into the dynamic evolution of LTCI policies and the crucial role of legislative measures in enhancing their effectiveness and accessibility.

Clinical and epidemiological panorama of leprosy at a tertiary center across the Nepal–India border in the post-elimination era: A cross-sectional study

ackground: Leprosy, an infectious granulomatous disease caused by Mycobacterium leprae continues to pose a significant public health challenge globally. Despite efforts towards its elimination, leprosy remains a re-emerging threat, with increasing cases in Nepal and India. Understanding the clinical, epidemiological, socioeconomic, and histological profiles of leprosy across the Nepal–India border is essential for effective disease management and control. Methods: A descriptive, prospective study was conducted over three years at a tertiary care center in Nepal. The patients were selected based on predefined inclusion and exclusion criteria. Clinical, epidemiological, and socioeconomic data were collected and analyzed to evaluate the profiles of leprosy cases in the study population. Results: A total of 110 patients were included in the study, with a mean age of 33.54 years. The majority of the patients were Nepalese. The mean duration of the disease was 17.6 months, with a wide range observed. Borderline leprosy was the most common clinical presentation. Bacteriological positivity was observed in 85% of the cases, indicating active transmission of the disease within the community. A significant proportion of the patients (97%) belonged to the low to middle-class category. A reaction was seen in 14.5% of the patients. Conclusion: Despite efforts toward its elimination, leprosy remains a public health problem across borders. The high burden of leprosy cases, coupled with socioeconomic challenges and active transmission, underscores the need for continued vigilance and targeted interventions. Addressing cross-border dynamics, enhancing access to healthcare services, and implementing comprehensive control strategies are essential for effectively controlling leprosy. Key words: Leprosy, Clinical, Epidemiological, Cross-sectional study, Nepal–India border, Post-elimination era

Clinical and socioeconomic pattern of infective dermatoses in pediatric population at a tertiary care center of Northeast India

Background: Cutaneous disorders are one of the most important components of any health-care system, especially which including children. Infective dermatoses are the most common skin diseases in children. The pattern of dermatoses in children varies from one country to another and within the same country from one state to another due to various climatic, cultural, and socioeconomic factors. Aims and Objectives: The aims and objectives are to study the clinical and socioeconomic profile of cutaneous infections and infestations among children. Materials and Methods: All children up to 12 years presenting with cutaneous infections and infestations were taken as study participants. A detailed history of the disease, socioeconomic status, and housing condition was taken from the patients as well as from the parents. Local, general, and systemic examinations were carried out on all the children and their examination findings were recorded in a standard pro forma for analysis and interpretation of data. Results: A total number of 1932 were children aged 0–12 years patients attended the Dermatology Outpatient Department during the study period of which 665 (34%) presented with infective dermatoses. 61.20% of patients belonged to school-aged children (5–12 years) 76.7% had a family with 4–6 members. 67.67% were from the rural areas, and 77.4% belonged to the lower class. Scabies was the leading offender (29.92%) among infective dermatoses followed by Impetigo contagiosa (20.45%). Conclusion: There is an increased incidence of cutaneous infections and infestations with increasing age among children. The incidence is associated with housing conditions, family size, socioeconomic strata, and seasonal. Most of these conditions are common and controllable with easy preventive and curative measures.

Socio-economic profile of wheat growers in Ballia district of Uttar Pradesh

Socio-economic profile of wheat growers in Ballia district of Uttar Pradesh

A Study on the Socio-Economic Development of Western Rajasthan’s Craft Artisans

This paper offers a comprehensive analysis of the socio-economic development of craft artisans in Western Rajasthan, focusing on Jodhpur District. The region, renowned for its rich cultural heritage and traditional craftsmanship, faces significant challenges including inadequate market access, limited financial resources, and lack of modern tools. These issues, compounded by the diminishing interest of the younger generation in traditional crafts, threaten the sustainability of the industry. This research examines the artisans’ socio-economic profiles, income levels, education, living conditions, and gender dynamics. It evaluates the impact of government policies, identifies key challenges, and explores strategies for improvement. The mixed-methods approach includes literature reviews, case studies, data analysis, and stakeholder workshops to provide actionable recommendations for enhancing artisans’ livelihoods and preserving their craft heritage.

INTEGRATED ASSESSMENT OF CLIMATE CHANGE ADAPTATIONS FOR THE RESILIENT AGRICULTURAL PRODUCTION SYSTEM IN SOUTH PUNJAB, PAKISTAN

Agricultural production systems are multidimensional, interlinked, complex and diverse, and need special attention to cope with changing climate, technology and changes in input and output market structure. Climate change is an evident phenomenon that drastically affects the agricultural production system. The developing countries mainly rely on farming activities for the needs of food and Fiber. This study aims to find climate change impacts and economic analysis of proposed adaptations and to formulate a climate-resilient agricultural production system. The primary and secondary data were collected by conducting a well-designed South Punjab survey. The secondary data about historical crop yields, socioeconomic profiles, climate data, and crop simulation results are incorporated into the model. The TOA-MD (Tradeoff analysis multidimensional impact assessment) model was used for the economic analysis. The results showed substantial negative impacts of climate change on farm income. The adaptations regarding climatic variations are present and increase the net farm returns adopted by farming communities, which are projected in public policies. The financial inclusion of the farming community is needed in terms of farm insurance and finance.

USERS’ SATISFACTION WITH INTERCITY BUS TERMINAL QUALITY IN LAGOS STATE, NIGERIA

Globally, efficient intercity public transport relies on well-designed and high-quality terminal facilities and services to enhance accessibility, mobility, and safety for passengers and freight. Despite governmental efforts, bus terminals in Nigerian urban areas are becoming hotspots for unregulated activities and traffic chaos. In response, this study investigates users’ satisfaction with Lagos State's intercity bus terminal quality, analysing socio-economic profiles, satisfaction levels with quality of terminal facilities (QoTF) and services (QoTS), and challenges impacting terminal operations. Using a cross-sectional survey, 200 questionnaires were distributed to terminal users, employing a multistage sampling technique. Descriptive (weighted mean analysis) and inferential (multiple linear regression [MLR] analysis) statistics were employed for data analysis. Results indicate that the majority of respondents are male, aged below 40, and permanent terminal users. Satisfaction is noted with 13 out of 24 parameters of QoTF, with top-ranking parameters including parking space, restaurant facilities, and waste disposal facilities. However, dissatisfaction is expressed with 8 out of 14 parameters of QoTS. Least-satisfied QoTS parameters include staff attitudes, passenger safety, and bus service reliability. Top-rated challenges affecting terminal operations are security concerns, sanitation facility deficiencies and insufficient passenger amenities. MLR analysis indicates a significant influence of terminal facilities on overall service satisfaction (F= 2.899, p= 0.000 <0.05). In conclusion, enhancing both terminal facilities and services is crucial for efficient operations in Lagos State's bus terminals. Recommendations include improving security measures, sanitary infrastructure and staff training to address user concerns and enhance satisfaction.

Profile of patients referred for lung transplant and their transplant-free survival.

Lung transplant (LTx) is a potential treatment option for all patients with chronic, end-stage respiratory disease, who are refractory to optimal medical therapy or where no medical therapy exists. In India, LTx is still in its evolving stages and published literature is sparse. The current study was carried out to study the selection criteria for lung transplant and to evaluate the clinical and socio-economic profile of patients referred for the same at a tertiary health care facility. The study was a descriptive, prospective, observational study. All adults referred for lung transplant were evaluated for clinical and laboratory profiles. All enrolled patients were assessed for presence of referral criteria, listing criteria, contraindications, and willingness for lung transplant. These patients were followed up for 2 years for transplant-free survival, and the Cox proportional hazards model was used to determine independent predictors of all-cause mortality. A total of 103 were included in study. The most common diagnosis was interstitial lung disease (57.2%), followed by bronchiectasis (17.5%) and COPD (13.6%). Most patients were referred for LTx at an advanced stage as 90% met listing criteria. Fifty-four (52.4%) patients had an absolute or relative contraindication to transplant; however, the majority of those contraindications were modifiable. Patients with a lower socio-economic status were less likely to be willing for LTx. The median survival was 757 days. A 6-minute walk distance (6MWD) lesser than 250 m was found to be an independent predictor of mortality. Making patients aware about lung transplant early in their treatment may give them sufficient time to come to terms with their disease and understand the risk and benefits associated. Efforts should be focused on screening and early treatment of reversible contraindications for the eligible patients. Patients with 6MWD < 250 m are at increased risk of mortality.

Socio-Economic Profile of KVK Staff and Farmers for Utilization of ICT Tools in Central Uttar Pradesh, India

Socio-Economic Profile of KVK Staff and Farmers for Utilization of ICT Tools in Central Uttar Pradesh, India

Purchasing Behaviour and Satisfaction Level of Farmers Regarding Groundnut Seeds

India's agricultural sector is a vital pillar of the economy, contributing significantly to the nation's GDP. As the world's largest producer of various commodities like pulses, milk, tea, and spices, and ranking second in fruits, vegetables, and grains, India's agricultural prowess is undeniable. One of the pivotal reasons to this success is the role of seeds, serving as the genetic foundation for plant growth and development. The Indian seed industry, valued at nearly 9000 crores and growing at a Compound Annual Growth Rate (CAGR) of 12.43%, reflects the nation's commitment to agricultural innovation and advancement. Hybrid seeds, occupying 65% of the market share, are preferred over open-pollinated varieties, driving growth and efficiency in crop production. The study was undertaken with aim and objectives to study the socio-economic profile, purchasing behaviours, satisfaction level and problem faced by the farmers during groundnut crop establishment. A survey of 200 respondents from 10 villages of Dhoraji Taluka, Rajkot district, Gujarat, provides insights into the diverse agricultural community. The study covers demographics, education, income, landholding, cropping patterns, gender distribution, family types, irrigation sources, seed procurement, awareness of agricultural products, promotional influences, factors affecting seed purchases, satisfaction levels, and challenges in crop establishment. Respondents had income mostly between 1-5 lakhs per year. Landholding of the respondents was 1-5 acres. Groundnut was cultivated mainly in the kharif season. Farmers were using various irrigation sources like tube well, open well and canal. Seeds were mainly purchased through various channels like retailers, Agricultural universities, owned seeds and cooperative societies and oil mills. Farmers were facing major problems like higher input costs and prevalence of various disease &amp; pest attack on groundnut crop.

Intermittent Fasting: Socio-Economic Profile of Spanish Citizens Who Practice It and the Influence of This Dietary Pattern on the Health and Lifestyle Habits of the Population.

1. To study the prevalence of IF among the Spanish population. 2. To explore how demographic factors influence the choice to adopt this dietary approach. A descriptive cross-sectional study was conducted on the Spanish population using the NutSo-HH questionnaire, which was constructed, validated, and disseminated by the research team through a non-probabilistic snowball sampling approach, collecting socio-demographic data and nutritional, social and lifestyle habits of the population. A valid sample of 22,181 people participated, of whom 4.59% (n = 1018) said they practiced IF. The data show that more middle-aged men than women practice IF. In addition, individuals who follow IF methods are less likely to have no control over their food intake, are less scared to gain weight and have a higher body image, but no differences were found related to unhealthy food and nights out. There were also no significant differences in terms of the level of education, income, size of municipality, or region of residence. In conclusion, a person who practices IF seems to have adopted a healthier lifestyle and social habits.

Geo-sustainable Practices in Urban Agriculture: A Study of Sustainable Land Use and Natural Resource Conservation at Household Level

This study explores urban agriculture as a solution to food insecurity in Lahore, Pakistan, amid rapid urbanization and declining agricultural productivity. Using a mixed methods approach, the research assesses the current state of urban agriculture, community willingness to adopt such practices, and the factors influencing this adoption. Data was collected from households in Johar Town and Faisal Town through surveys, complemented by a literature review of global urban agriculture policies. The findings reveal limited practice of urban agriculture but significant willingness among residents, driven by factors such as self-reliance, high food prices, and health concerns. However, barriers like lack of access to land, guidance, and time hinder widespread adoption. The socio-economic profile of respondents indicates varied interest and awareness based on age, income, and household size. The study emphasizes the need for policies promoting urban agriculture, including community gardens, vertical farms, and wastewater reuse. Educational campaigns and professional training are essential to raise awareness and build skills among urban dwellers. The research concludes that urban agriculture can enhance food security and sustainability in Lahore with robust policy support and community engagement. Future research should expand the study area, use more nuanced data collection methods, and explore the economic viability of urban agriculture initiatives. Such efforts aim to advance urban agriculture practices and policies in Lahore, making the city more self-sufficient and resilient in food production.

The role of socio-economic disparities in the relative success and persistence of SARS-CoV-2 variants in New York City in early 2021.

Socio-economic disparities were associated with disproportionate viral incidence between neighborhoods of New York City (NYC) during the first wave of SARS-CoV-2. We investigated how these disparities affected the co-circulation of SARS-CoV-2 variants during the second wave in NYC. We tested for correlation between the prevalence, in late 2020/early 2021, of Alpha, Iota, Iota with E484K mutation (Iota-E484K), and B.1-like genomes and pre-existing immunity (seropositivity) in NYC neighborhoods. In the context of varying seroprevalence we described socio-economic profiles of neighborhoods and performed migration and lineage persistence analyses using a Bayesian phylogeographical framework. Seropositivity was greater in areas with high poverty and a larger proportion of Black and Hispanic or Latino residents. Seropositivity was positively correlated with the proportion of Iota-E484K and Iota genomes, and negatively correlated with the proportion of Alpha and B.1-like genomes. The proportion of persisting Alpha lineages declined over time in locations with high seroprevalence, whereas the proportion of persisting Iota-E484K lineages remained the same in high seroprevalence areas. During the second wave, the geographic variation of standing immunity, due to disproportionate disease burden during the first wave of SARS-CoV-2 in NYC, allowed for the immune evasive Iota-E484K variant, but not the more transmissible Alpha variant, to circulate in locations with high pre-existing immunity.

Socio-Economic, Socio-Personal and Demographic Profiling of KVK-Based Vermicompost Training Participants: Evidence from Bihar, India

Vermicompost is essentially a varied blend of decomposed farm waste, food waste, and worm castings, organically produced using different species of earthworms. This nutrient-dense organic fertilizer is gaining significant attention amid climate change concerns and the push for organic farming. Agricultural experts are increasingly advising farmers to transition from synthetic fertilizers to organic manures, prompting the need for training programs on vermicomposting to educate farmers about this valuable practice. This research aimed to examine the socioeconomic, demographic, and socio-personal characteristics of farmers who participated in three recent vermicomposting training sessions organized by three Krishi Vigyan Kendras (KVKs) in Bihar, India. This study adopted cross sectional survey design. The rationale behind this part of the project is to understand the various attributes of the training participants which could contribute in different ways to the adoption of vermicomposting. It also sought to reveal the status of those variables in relation to the adoption scenario amongst the current farming communities in those three districts. The study was carried out in three districts of Bihar—Samastipur, Muzaffarpur, and Madhubani—with a sample size of 150 farmers. Surveys were conducted in two blocks from each of these districts, selected purposefully. Data analysis was performed using statistical tools in SPSS to calculate the index for each individual farmer. A varied socio-demographic profile of the respondents was revealed who participated in the KVK-based vermicomposting training and it also provided a snapshot of the farming communities of the specific regions. This analysis concludes that the training sessions at three different KVKs attracted a diverse group of farm participants, characterized by varying demographic, socioeconomic, and socio-personal attributes. It is noteworthy that the majority of farmers who attended the vermicomposting training programs were small-scale and marginal farmers, with only a small percentage having high income levels. It is recommended to encourage stakeholder farmers to adopt this technology by providing training and support tailored to their socio-demographic profiles, as this could potentially increase the adoption rate among farmers.

Swedish farmers' approval of nudges

AbstractInterest in the use of behavioral policy approaches, such as nudges, has strongly increased over the past years, including in the domains of food, agricultural and environmental policies. While the approval of nudges among the general public has been studied extensively, we know little about the attitude of farmers toward nudging. Farmers may (perceive to) be affected directly by food and agriculture nudges, which may result in different approval as compared to citizens. Moreover, given the increased interest in the use of nudges targeting farm behavior, it is relevant to know their attitude toward these policies. In an online survey, 342 Swedish farmers indicated their approval or disapproval of the same nudging policies that have been investigated in earlier studies with citizens. We find that, overall and over all areas covered, farmers have remarkably lower approval rates of nudging policies than the general public. While this may be partially explained by their socioeconomic profiles, also the connection of some nudges with farming activities may explain their different opinion. We find that farmers with a “green” orientation are generally more favorable, especially so for “green” nudges. [EconLit Citations: Q18, D03].

Using a smart city framework to advance justice: applying an equity lens to compare air quality in neighbourhoods of different socioeconomic profiles

ABSTRACT The smart city framework, while initially received with enthusiasm, has been critiqued for reproducing urban inequalities rather than reducing marginalisation. This paper demonstrates how application of an equity lens within a smart city framework can advance justice by addressing air quality inequities in a diverse coastal city. We conducted a pilot study in which integrated air quality sensors are deployed for criteria pollutants in two contrasting neighbourhoods, to demonstrate that the smart city framework can be used with an equity lens for baseline data collection and analysis to support communities of colour in advocating on their own behalf. Communities of colour are disproportionately impacted by poor air quality, pollution exposure, and health burdens. Research shows that marginalised communities often lack air quality sensors installed by traditional regulatory measures. Thus, smart city technology using targeted deployment of air quality sensors can aid neighbourhood-level sampling, and data can be leveraged by marginalised communities for policy development to address inequities in pollution exposure and health impacts. In this study, air quality sensors were deployed and integrated with a web-based interactive platform called Community Resiliency Information Systems (CRIS) to compare a white, affluent neighbourhood with a marginalised, predominantly Black neighbourhood in Saint Petersburg, Florida. Data collected indicates significant differences in concentrations of air pollutants in the study neighbourhoods; exposure levels are higher in the poor, minority-dominated neighbourhood. CRIS facilitates two-way communication between residents and policy makers, demonstrating that careful application of technology can produce data to support community advocacy and address environmental inequalities. Key policy highlights The smart city framework integrated with air quality sensors has the potential to advance justice when applied through an equity lens. This pilot project demonstrates air quality inequities at neighbourhood level comparisons (affluent vs marginalised) in a coastal city – exposure levels are higher in the poor, minority-dominated neighbourhood. The CRIS platform facilitates two-way communication between residents and policy makers, demonstrating that careful application of technology can produce data to support community advocacy and address environmental inequalities.

Perceptible landscape patterns reveal invisible socioeconomic profiles of cities

Urban landscape is directly perceived by residents and is a significant symbol of urbanization development. A comprehensive assessment of urban landscapes is crucial for guiding the development of inclusive, resilient, and sustainable cities and human settlements. Previous studies have primarily analyzed two-dimensional landscape indicators derived from satellite remote sensing, potentially overlooking the valuable insights provided by the three-dimensional configuration of landscapes. This limitation arises from the high cost of acquiring large-area three-dimensional data and the lack of effective assessment indicators. Here, we propose four urban landscapes indicators in three dimensions (UL3D): greenness, grayness, openness, and crowding. We construct the UL3D using 4.03 million street view images from 303 major cities in China, employing a deep learning approach. We combine urban background and two-dimensional urban landscape indicators with UL3D to predict the socioeconomic profiles of cities. The results show that UL3D indicators differs from two-dimensional landscape indicators, with a low average correlation coefficient of 0.31 between them. Urban landscapes had a changing point in 2018–2019 due to new urbanization initiatives, with grayness and crowding rates slowing, while openness increased. The incorporation of UL3D indicators significantly enhances the explanatory power of the regression model for predicting socioeconomic profiles. Specifically, GDP per capita, urban population rate, built-up area per capita, and hospital count correspond to improvements of 25.0%, 19.8%, 35.5%, and 19.2%, respectively. These findings indicate that UL3D indicators have the potential to reflect the socioeconomic profiles of cities.

Eco-chic or trendy-chic? Decoding consumer preferences in sustainable and fast fashion across the EU

Abstract The ongoing transformation of the fashion industry is driven by an increasing focus on sustainability, ethical practices, and responsible consumer behavior. Simultaneously, social media platforms have emerged as influential forces in this field, shaping fashion trends and consumer preferences. Despite a substantial body of literature investigating consumer preferences between fast and sustainable fashion, a gap in understanding the intricate relationship between fashion preferences, socio-economic profiling, and social media engagement is evident. Thus, this research was aimed at comparatively decoding EU consumers’ preferences for fast fashion against sustainable fashion by exploring the interplay of demographic factors ‒ age, gender, and geographical location ‒ on fashion preferences, as expressed through the digital engagement with fashion-related content on the Meta social platforms. The research methodology implied resorting to logistic regression analysis, aiming to uncover the underlying patterns that fundamentally characterize consumers’ preferences for fashion in the EU. The results provide novel insights into how digital engagement with fashion-related content can act as a barometer for regional fashion identities and preferences, useful for the identification of both convergence and inflection points. Moreover, findings offer a robust foundation for crafting strategies that promote sustainable fashion practices, tailored to specific EU age, gender, and location demographics, by leveraging the insights gained about EU consumer preferences.

Progress Tracker Breast Cancer Registry: A Breast Cancer Canada initiative.

e23018 Background: Significant gaps exist in the collection of real-world evidence and validated patient-reported outcome measures (PROMs) data from individuals with breast cancer. Variations in treatment and surveillance care across regional jurisdictions present knowledge gaps across diverse populations which remain difficult to study. The PROgress Tracker Breast Cancer Registry, a large, prospective Canadian PROMs cohort study aims to identify care gaps through the lived patient experience to inform patient-centered care and new research directions. Methods: PROgress Tracker is a real-world, longitudinal, non-interventional PROMs registry directed by Breast Cancer Canada, a registered non-profit patient-led organization, and data managed by University of Calgary’s POET program. Launched in October 2023, this registry aims to enroll up to 50,000 adult Canadian participants with a histologic diagnosis of in-situ or invasive breast cancer (stage 0 through IV) within 10 years. A volunteer-led peer-to-peer support model, based in regional and provincial hubs across Canada, facilitates participant recruitment, engagement, and retention. Individuals who self-identify for study inclusion provide informed consent, demographic and socioeconomic profile, and clinical information on their breast cancer diagnosis. Every three months (and up to 10 years) a bilingual digital platform to reduce barriers to access is used to provide all PROgress Tracker participants 8 validated PROMs to capture evolving measures of self-efficacy for wellbeing, symptoms and overall global functioning. Based on treatment, up to 10 additional PROMs to assess the immediate adverse effects and long-term impacts of treatment are collected. PROgress Tracker has the additional capacity to link to external ethics-approved studies to investigate clinical outcome and healthcare utilization metrics for participants consenting to additional studies. Results: In progress. Conclusions: PROgress Tracker represents Canada’s first national PROMs breast cancer registry. Its unique design and implementation by a patient-led research organization helps fill gaps in current knowledge through longitudinal follow up of patients prior to, during, and after cancer care, and from the time from diagnosis through active treatment, long-term survivorship, and/or palliative care. The PROgress Tracker Registry will comprehensively gather the validated real-world data information rarely collected in in the traditional clinical or trial-based research setting using a novel self-enroll design and digital process. Such information is crucial to support evidence-based decision making to inform patient-centered healthcare change. This allows comparison across Canadian jurisdictions, is scalable to other jurisdictions around the world and further explores the utility of electronic PROMs data capture within a diverse patient population.