COVID-19 and 'immune boosting' on the internet: a content analysis of Google search results.

OBJECTIVE: The spread of misinformation has accompanied the coronavirus pandemic, including topics such as immune boosting to prevent COVID-19. This study explores how immune boosting is portrayed on the internet during the COVID-19 pandemic. DESIGN: Content analysis. METHODS: We compiled a dataset of 227 webpages from Google searches in Canada and the USA using the phrase 'boost immunity' AND 'coronavirus' on 1 April 2020. We coded webpages for typology and portrayal of immune boosting and supplements. We recorded mentions of microbiome, whether the webpage was selling or advertising an immune boosting product or service, and suggested strategies for boosting immunity. RESULTS: No significant differences were found between webpages that appeared in the searches in Canada and the USA. The most common types of webpages were from news (40.5%) and commercial (24.7%) websites. The concept of immune boosting was portrayed as beneficial for avoiding COVID-19 in 85.5% of webpages and supplements were portrayed as beneficial in 40% of the webpages, but commercial sites were more likely to have these portrayals. The top immune boosting strategies were vitamin C (34.8%), diet (34.4%), sleep (34.4%), exercise (30.8%) and zinc (26.9%). Less than 10% of the webpages provide any critique of the concept of immune boosting. CONCLUSIONS: Pairing evidence-based advice for maintaining one's health (eg, healthy diet, exercise, sleep) with the phrase immune boosting and strategies lacking in evidence may inadvertently help to legitimise the concept, making it a powerful marketing tool. Results demonstrate how the spread of misinformation is complex and often more subtle than blatant fraudulent claims.

Phyllanthus niruri (stone breaker) herbal therapy for kidney stones; a systematic review and meta-analysis of clinical efficacy, and Google Trends analysis of public interest.

INTRODUCTION: Phyllanthus niruri (P. niruri) is the most commonly listed active ingredient in commercially available herbal therapies for kidney stones, despite limited supporting clinical evidence. We performed a meta-analysis to evaluate its efficacy in reducing stone burden. We used Google Trends to analyze its relative popularity in internet searches relative to conventional stone therapies. MATERIALS AND METHODS: A comprehensive literature search for controlled human studies containing data on the effect of P. niruri treatment on stone size and number was performed. Pooled analysis of change in mean stone size and number with P. niruri was performed using a fixed-effects model. Standardized mean difference (SMD) and 95% CI were reported. Google searches in the United States within the 'Health' category, for topics 'Gale of the wind (P. niruri)', 'Extracorporeal shockwave lithotripsy' (ESWL), 'Ureteroscopy' (URS), 'Laser lithotripsy' (URSL) and 'Percutaneous nephrolithotomy' (PCNL), conducted between January 2014 and December 2018, were quantified. Annual median relative search volumes (RSV; 0-100 scale) were compared using the Kruskal-Wallis test. Post-hoc pairwise comparisons were performed using the Dunn test with Holm-Sidak adjustment. RESULTS: Two studies met inclusion criteria. P. niruri treatment resulted in significant decreases in mean stone size (SMD -0.39 cm, 95% CI = -0.68 to -0.09, p = 0.01) and number (SMD -0.38, 95% CI = -0.68 to -0.09, p = 0.01). Median RSV for P. niruri was similar to that for ESWL, PCNL and URS through 2015, but was significantly higher than for ESWL and PCNL after 2015, and higher than for URS after 2016 (each p value p ≤ 0.0012). CONCLUSIONS: Limited clinical evidence supports modest efficacy of P. niruri in reducing stone burden, pending further study. Public interest in P. niruri is growing within the United States, possibly reflecting a rising demand.

A cross-sectional study of website claims related to diagnoses and treatment of non-musculoskeletal conditions.

BACKGROUND: The Danish Authorisation Act sets out the chiropractic scope of practice. Under this legislation the scope of practice is diagnostics, prevention and treatment of biomechanical disorders of the spine, pelvis and extremities. Despite this and an international movement toward a scientifically active, evidence-based profession with a focus on treatment of musculoskeletal disorders, a large proportion of chiropractors still offer treatment of non-musculoskeletal disorders. This study aimed to investigate the content and characteristics of website claims by chiropractors in Denmark on non-musculoskeletal conditions and to assess whether these were aligned with the Danish Authorisation Act of the chiropractic scope of practice. METHODS: In this cross-sectional study data on a representative sample were collected from chiropractic clinic websites in Denmark. Information on non-musculoskeletal conditions from the websites was categorised. For each non-musculoskeletal condition, it was noted whether a clarifying explanation justifying the presence of the diagnosis was available and what it said. These explanations were assessed and categorised according to agreement or disagreement with the chiropractic scope of practice as defined by the Danish Authorisation Act. In addition, data on geographic location, clinic size, reimbursement coverage, country of education and special clinical focus (children, athletes, etc) were collected. Differences in characteristics of the clinics and the frequency of reporting non-musculoskeletal conditions were tested using Pearson's chi-squared or Fisher's exact test. RESULTS: A geographically stratified, random sample of 139 (57%) websites was included from chiropractic clinics in Denmark. In total, 36 (26%) of the sampled websites mentioned conditions of non-musculoskeletal origin that was not accompanied by a clarifying explanation in agreement with the chiropractic scope of practice. A positive association between advertising infant or children's care and advertising treatment for non-musculoskeletal disorders (without adequate explanation) was observed. CONCLUSIONS: A total of 36 (26%) of the sampled chiropractic websites in Denmark mentioned diagnoses or symptoms of non-musculoskeletal origin on their websites without presenting an adequate clarifying explanation in agreement with the chiropractic scope of practice as defined by the Danish Authorisation Act. This could be misleading for patients seeking care for non-musculoskeletal conditions and consequently lead to inappropriate treatment.

Words matter: the prevalence of chiropractic-specific terminology on Australian chiropractors' websites.

BACKGROUND: Chiropractors use words and phrases in unique ways to express traditional, chiropractic-specific theories. This lexicon represents concepts that reinforce the separation of chiropractic from other health care professions. It may impact referrals both to and from chiropractors, lead to public confusion about health care issues, and reduce cross-disciplinary research. Therefore, it is important to understand how prevalent chiropractic-specific terms are in publicly available media. METHODS: Five chiropractic terms were selected: subluxation, adjustment, vital (-ism/-istic), wellness, and Innate (Intelligence). States and territories in Australia were proportionately sampled according to population of chiropractors using a Google search for chiropractors' private practice websites. The top results were recorded. Websites were word-searched on every publicly available page for the five terms. Context was checked to count only terms that were used to support a chiropractic-specific concepts. The number of occurrences of each term was recorded, tallied nationally and by state/territory. Descriptive statistics were applied to determine prevalence. RESULTS: Three hundred sixty-nine websites were sampled, based on an estimate of 5500 chiropractors practising in Australia. Nationally, 85% of chiropractors used one or more terms. The term adjust (-ing/-ment) occurred most frequently, being found on 283 websites (77%) with a total of 2249 occurrences. Wellness was found on 199 websites (54%) with 872 occurrences; subluxation was found on 104 websites (28%), 489 occurrences; vital (-ism/-istic) on 71 websites (19%) with 158 occurrences; and Innate was least used, being found on 39 websites (11%) with 137 occurrences. CONCLUSION: A majority of the Australian chiropractors sampled used one or more chiropractic-specific terms on their websites. Future research should explore the effects of chiropractic language on the public, policy-makers, and other health care professionals.

An internet-based mind/body intervention to mitigate distress in women experiencing infertility: A randomized pilot trial.

OBJECTIVE: To determine if an internet-based mind/body program would lead to participants experiencing infertility (1) being willing to be recruited and randomized and (2) accepting and being ready to engage in a fertility-specific intervention. Secondary exploratory goals were to examine reduced distress over the course of the intervention and increased likelihood to conceive. METHODS: This was a pilot randomized controlled feasibility trial with a between-groups, repeated measure design. Seventy-one women self-identified as nulliparous and meeting criteria for infertility. Participants were randomized to the internet-based version of the Mind/Body Program for Fertility or wait-list control group and asked to complete pre-, mid- and post-assessments. Primary outcomes include retention rates, number of modules completed, and satisfaction with intervention. Secondary exploratory outcomes sought to provide preliminary data on the impact of the program on distress (anxiety and depression) and self-reported pregnancy rates relative to a quasi-control group. RESULTS: The retention, adherence, and satisfaction rates were comparable to those reported in other internet-based RCTs. Although time between pre- and post-assessment differed between groups, using intent-to-treat analyses, women in the intervention group (relative to the wait-list group) had significant reduction in distress (anxiety, p = .003; depression, p = .007; stress, p = .041 fertility-social, p = .018; fertility-sexual, p = .006), estimated as medium-to-large effect sizes (ds = 0.45 to 0.86). The odds of becoming pregnant was 4.47 times higher for the intervention group participants as compared to the wait-list group, OR 95% CI [1.56, 12.85], p = .005 and occurred earlier. The findings suggest that the research design and program specific to this population are feasible and acceptable. Replication efforts with an active control group are needed to verify distress reduction and conception promotion findings.

Internet Marketing of Cardioprotective Dietary Supplements.

Objectives: Considering high prevalence of use of dietary supplements and their easy access on the internet, the aim of this research was to examine and assess the prevalence of the internet marketing of heart-protective supplements as the most popular supplements of today, and to investigate the quality and quantity of information that are available to consumers on the sale websites. Design: Three major search engines (Google, Yahoo, and Bing) and keywords "cardiovascular supportive supplements online buy" were used to identify websites that sell cardioprotective dietary supplements. Content of first 50 listed websites in each engine was evaluated for its compliance with regulatory acts while information about supplements' efficacy and safety was compared with the results of the latest scientific research. Results: Of a total of 150 listed websites, 89 selling supplements for the specific indication underwent further analysis. The most commonly registered cardioprotective dietary supplements on the internet were supplements based on omega-3 fatty acids (omega-3) (57 websites, 64.05%). Related to the websites selling omega-3 supplements, risk reduction claims were presented at 23 (40.35%), whereas structure or function claims were present at 50 (87.72%) analyzed websites, but followed with Food and Drug Administration disclaimer only on 68.00% of them. Information about adverse effects were rarely pointed out (1 website, 1.75%) unlike warnings, which were significantly more available to consumers (38, 66.67%). Conclusions: According to obtained results, most of the analyzed websites that sell omega-3 supplements did not contain all important medical information required by Dietary Supplement Health and Education Act. Since use of internet marketing is in expansion and since consumers have no access to relevant medical information about dietary supplements on the selling websites, there is a clear need for better quality control of websites and greater public awareness of these widely used products.

Acne beliefs, treatment-seeking behaviors, information media usage, and impact on daily living activities of Thai acne patients.

BACKGROUND: Acne is a very common skin disease. Information on it is readily available and accessed by most patients. Nevertheless, they tend to have misunderstandings about the disease. AIMS: This study investigated Thai acne patients' perceptions of, and beliefs, about acne; their treatment-seeking behaviors; and the data sources available to them. PATIENTS/METHODS: A cross-sectional, questionnaire-based study was conducted among teenage and adult acne patients at the skin clinics of the Department of Dermatology and the Department of Pediatrics, Siriraj Hospital, January-December 2017. RESULTS: A total of 330 patients with a mean age of 23.89 ± 7.19 years (range: 9-51 years) were enrolled. Hormonal factors were the most common determinant thought to worsen acne (80.6%), followed by dirt (72.4%), inadequate sleep (65.5%), cosmetics (58.2%), and stress (55.8%), whereas frequent facial washing and exercise were the least common (4.8% each). The most common information source utilized by patients was friends (40.9%), followed by digital media (36.8%). Both males and females felt their acne greatly affected their quality of life. Before visiting the hospital, most patients used vitamin supplements and over-the-counter drugs as treatment. CONCLUSIONS: Some patients had good conceptions of certain aspects of acne, such as the influence of hormones or food, whereas others had misunderstandings about the effects of poor hygiene on acne. Friends and websites were the most common information resources exploited by patients. Acne substantially impaired the quality of patients' lives.

Evaluating a model for the capacity building of midwifery eduators in Bangladesh through a blended, web-based master's programme.

Background: While setting international standards for midwifery education has attracted considerable global attention, the education and training of midwifery educators has been relatively neglected, particularly in low-resource settings where capacity building is crucial. Objective: The aim of this study was to describe the expectations of midwifery educators in Bangladesh who took part in a blended web-based master's programme in SRHR and the extent to which these were realized after 12 months of part-time study. Methods: Both quantitative and qualitative methods have been used to collect data. A structured baseline questionnaire was distributed to all participants at the start of the first course (n = 30) and a second endpoint questionnaire was distributed after they (n = 29) had completed the core courses one year later. At the start of the first course, five focus group discussions (FGD) were held with the midwifery educators. Descriptive statistics and content analysis were used for the analyses. Results: Midwifery educators who took part in the study identified expectations that can be grouped into three distinct areas. They hoped to become more familiar with technology, anticipated they would learn pedagogical and other skills that would enable them to better support their students' learning and thought they might acquire skills to empower their students as human beings. Participants reported they realized these ambitions, attributing the master's programme with helping them take responsibility for their own teaching and learning, showing them how to enhance their students' learning and how to foster reflective and critical thinking among them. Conclusions: Midwifery educators have taken part in a creative learning environment which has developed their engagement in teaching and learning. They have done this using a blended learning model which combines online learning with face-to-face contact. This model can be scaled up in low resource and remote settings.

"My gut feeling is we could do more..." a qualitative study exploring staff and patient perspectives before and after the implementation of an online prostate cancer-specific holistic needs assessment.

BACKGROUND: Men surviving prostate cancer report a wide range of unmet needs. Holistic needs assessments (HNA) are designed to capture these, but are traditionally paper-based, generic, and only carried out in secondary care despite national initiatives advocating a "shared care" approach. We developed an online prostate cancer-specific HNA (sHNA) built into existing IT healthcare infrastructure to provide a platform for service integration. Barriers and facilitators to implementation and use of the sHNA were explored from both the patients and healthcare professionals (HCPs) perspectives. METHODS: This qualitative study consisted of two phases. Phase 1 used semi-structured interviews to explore HCPs (n = 8) and patients (n = 10) perceptions of the sHNA, prior to implementation. Findings were used to develop an implementation strategy. Phase 2 used semi-structured interviews to explore HCPs (n = 4) and patients (n = 7) experienced barriers and motivators to using the sHNA, 9 to 12 months after implementation. Interviews were audio-recorded, transcribed verbatim and thematically analysed. Themes were mapped to the Theoretical Domains Framework. RESULTS: HCPs and patients anticipated many benefits from using the sHNA. Barriers to implementation included: confidence to work in depth with prostate cancer patients, organisational and cultural change, and patient factors. Our implementation strategy addressed these barriers by the provision of disease specific training delivered in part by a clinical nurse specialist; and a peer-led IT supporter. Following implementation HCPs and patients perceived the sHNA as beneficial to their practice and care, respectively. However, some patients experienced barriers in using the sHNA related predominately to symptom perception and time since treatment. HCPs suggested minor software refinements. CONCLUSIONS: This work supports the importance of identifying barriers and motivators to implementation, and using targeted action via the development of an implementation strategy to address these. Whilst this process should be on-going, undertaking this work at an early stage will help to optimise the implementation of the sHNA for future trials.

Internet survey on the provision of complementary and alternative medicine in Japanese private clinics: a cross-sectional study.

OBJECTIVE: Although the use of complementary and alternative medicine (CAM) by the general population has been surveyed previously, the provision of CAM by Japanese physicians in private clinics has not been studied. Universal health insurance system was established in Japan in 1961, and most CAMs are not on the drug tariff. We aimed to clarify the current status of CAM provided by physicians at private clinics in Japan. METHODS: We conducted an internet survey on 400 directors/physicians of private clinics nationwide on the provision of CAM from February 6 to February 10, 2017. Survey items included attributes of subjects, presence/absence of sections or facilities for provision of CAM, proportions of health insurance coverage for medical practices, and source of information. Private clinic was defined as a clinic run by one physician, with less than 20 beds. RESULTS: Commonly provided CAMs were Kampo (traditional Japanese herbal) medicines (34.8%) and supplements/health foods (19.3%). CAMs on the drug tariff were provided in 46.5% of cases at the clinics, but only 16.5% of cases were provided CAMs which were not on the drug tariff, at different neighboring facilities. Among different specialties, Kampo medicines were prescribed at obstetrics/gynecology (54.0%), orthopedics (44.4%), and dermatology (43.0%). Clinics not providing any CAM accounted for 53.5%. With regard to health insurance coverage, 96.8% of the clinics provided only or mainly health services on the universal national health insurance tariff (29.8% and 67.0%, respectively). CONCLUSION: Kampo medicines represent the most commonly used CAM in private clinics in Japan, and universal national health insurance coverage is considered to be the reason for the high rate of their use.

Internet health scams-Developing a taxonomy and risk-of-deception assessment tool.

The prevalence of health scams in Canada is increasing, facilitated by the rise of the Internet. However, little is known about the nature of this phenomena. This study sought to methodically identify and categorise Internet-based Health Scams (IHS) currently active in Canada, creating an initial taxonomy based on systematic Internet searches. A five-step Delphi approach, comprised of a multidisciplinary panel of health professionals from the University of British Columbia, in Vancouver, Canada, was used to establish consensus. The resulting taxonomy is the first to characterise the nature of IHS in North America. Five core areas of activity were identified: body image products, medical products, alternative health services, healthy lifestyle products, and diagnostic testing services. IHS purveyors relied on social expectations and psychological persuasion techniques to target consumers. Persuasion techniques included social engagement, claims of miraculous effects, scarcity, and the use of pseudoscientific language. These techniques exploited personality traits of sensation seeking, needing self-control, openness to taking risks, and the preference for uniqueness. The data gathered from the taxonomy allowed the Delphi panel to develop and pilot a simple risk-of-deception tool. This tool is intended to help healthcare professionals educate the public about IHS. It is suggested that, where relevant, healthcare professionals include a general discussion of IHS risks and marketing techniques with clients as a part of health promotion activities.

Recent Advances in the Understanding and Treatment of Health Anxiety.

PURPOSE OF REVIEW: To examine the diagnosis of health anxiety, its prevalence in different settings, public health significance, treatment, and outcome. RECENT FINDINGS: Health anxiety is similar to hypochondriasis but is characterized by fear of, rather than conviction of, illness. Lifetime prevalence rates are 6% in the population and as high as 20% in hospital out-patients, leading to greater costs to health services through unnecessary medical contacts. Its prevalence may be increasing because of excessive internet browsing (cyberchondria). Drug treatment with antidepressants has some efficacy but is not well-liked, but psychological treatments, including cognitive behavior therapy, stress management, mindfulness training, and acceptance and commitment therapy, given either individually, in groups, or over the Internet, have all proved efficacious in both the short and longer term. Untreated health anxiety leads to premature mortality. Health anxiety has become an increasing clinical and public health issue at a time when people are being formally asked to take more responsibility in monitoring their own health. More attention by health services is needed.

Automatic detection advantage of network information among Internet addicts: behavioral and ERP evidence.

Converging evidence has proved the attentional bias of Internet addicts (IAs) on network information. However, previous studies have neither explained how characteristics of network information are detected by IAs with priority nor proved whether this advantage is in line with the unconscious and automatic process. To answer the two questions, this study aims to investigate whether IAs prioritize automatic detection of network information from the behavior and cognitive neuroscience aspects. 15 severe IAs and 15 matching healthy controls were selected using Internet Addiction Test (IAT). Dot-probe task with mask was used in the behavioral experiment, while deviant-standard reverse oddball paradigm was used in the event-related potential (ERP) experiment to induce mismatch negativity (MMN). In the dot-probe task, when the probe location appeared on the Internet-related picture's position, the IAs had significantly shorter reaction time than do the controls; in the ERP experiment, when Internet-related picture appeared, MMN was significantly induced in the IAs relative to the controls. Both experiments show that IAs can automatically detect network information.

The interplay among stress, frustration tolerance, mindfulness, and social support in Internet gaming disorder symptoms among Chinese working adults.

INTRODUCTION: Internet gaming disorder (IGD) is a growing mental health threat across age groups, but existing literature regarding IGD mainly focuses on student populations. Empirical investigation of the risk and protective factors in adult populations is warranted. This study aimed to fill the research gap by examining whether stress and 3 positive psychology factors (ie, frustration tolerance, mindfulness, and social support) are associated with IGD symptoms in working adults. It was also the first attempt to test the buffering effects of these positive psychology factors on the relationship between stress and IGD vulnerability. METHOD: This cross-sectional study was conducted in Shenzhen, China. We recruited 327 full-time working Chinese adults (mean age = 31.93 years), who had online gaming experience and voluntarily completed an anonymous questionnaire with DSM-5 criteria to measure their IGD symptoms. RESULTS: Internet gaming disorder symptoms were positively correlated with stress and negatively correlated with the 3 positive psychology factors, among which mindfulness emerged as the most salient protective factor. Moreover, mindfulness, but not frustration tolerance and social support, was found to significantly alleviate the relationship between stress and IGD. DISCUSSION: Our findings provide supportive evidence for the protective and moderating roles of positive psychology variables against IGD among Chinese working adults. Workplace-based prevention programs may take the identified factors into account to help promote individuals' personal resources to mitigate development of IGD.

Bridging the digital divide: mobile access to personal health records among patients with diabetes.

OBJECTIVES: Some patients lack regular computer access and experience a digital divide that causes them to miss internet-based health innovations. The diffusion of smartphones has increased internet access across the socioeconomic spectrum, and increasing the channels through which patients can access their personal health records (PHRs) could help bridge the divide in PHR use. We examined PHR use through a computer-based Web browser or mobile device. STUDY DESIGN: Cross-sectional historical cohort analysis. METHODS: Among adult patients in the diabetes registry of an integrated healthcare delivery system, we studied the devices used to access their PHR during 2016. RESULTS: Among 267,208 patients with diabetes, 68.1% used the PHR in 2016; 60.6% of all log-ins were via computer and 39.4% were via mobile device. Overall, 63.9% used it from both a computer and mobile device, 29.6% used only a computer, and 6.5% used only a mobile device. After adjustment, patients who were black, Hispanic, or Asian; lived in lower socioeconomic status (SES) neighborhoods; or had lower engagement were all significantly more likely to use the PHR only from a mobile device (P <.05). Patients using the PHR only via mobile device used it less frequently. CONCLUSIONS: Mobile-ready PHRs may increase access among patients facing a digital divide in computer use, disproportionately reaching racial/ethnic minorities and lower SES patients. Nonetheless, even with a mobile-optimized and app-accessible PHR, differences in PHR use by race/ethnicity and SES remain. Continued efforts are needed to increase equitable access to PHRs among patients with chronic conditions.

Cancer-Related Internet Use and Online Social Networking Among Patients in an Early-Phase Clinical Trials Clinic at a Comprehensive Cancer Center.

PURPOSE: We examined patterns, correlates, and the impact of cancer-related Internet use among patients with advanced cancer in a phase I clinical trials clinic for molecularly targeted oncologic agents. METHODS: An anonymous questionnaire on Internet use for cancer-related purposes that incorporated input from phase I clinical trial oncologists and patients was self-administered by patients age ≥ 18 years in a phase I clinic. Multivariable modeling was used. Data were analyzed for the overall sample and by generation, which was defined by year of birth. RESULTS: Of 291 patients (52% women, 82% non-Hispanic white, 50% age ≤ 60 years), 62% were cancer-related Internet users (CIUs). Cancer-related Internet use was associated with an income of ≥ $60,000 (odds ratio, 2.42; P = .004). CIUs used the Internet to learn about their cancer (85%), treatment adverse effects (65%), clinical trials (52%), new alternative treatments (42%), and symptom management (41%). CIUs most frequently used the hospital Web site (70%) to learn about clinical trials, followed by ClinicalTrials.gov (42%) and search engines (41%). The emotional impact of Internet-derived cancer information on CIUs varied-56% felt empowered, 34% anxious, 29% relieved, and 17% confused. Cancer-related Internet information made 51% of patients from the Millennial (born after 1990) and Generation X/Y (born 1965 to 1990) CIU populations anxious compared with < 29% of CIUs from older generations (born 1964 and before). Most CIUs desired more online information about new experimental drugs (91%) and US Food and Drug Administration-approved drugs for cancer (72%). CONCLUSION: As most phase I patients use the Internet for cancer-related purposes, the Internet overall and hospital Web sites should provide more extensive, pertinent, and helpful information on clinical trials and cancer treatment to phase I patients.

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries.