Internet-Based Social Networking and Its Role in the Evolution of Chronic Cerebrospinal Venous Insufficiency

Vera, Chido D.; Herr, A.; Mandato, K.; Englander, M.; Ginsburg, Lauren; Siskin, Gary P.

doi:10.1053/j.tvir.2012.02.009

Cited by 17 publications

(21 citation statements)

References 20 publications

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“…Paolo Zamboni's therapy is a controversial surgical operation, devoted to cure the Chronic Cerebrospinal Venous Insufficiency (CCSVI), a new nosological entity which Zamboni suggested to be the cause or one of the causes of MS in a high percentage of MS patients [51]. As noticed by Vera et al [52] and by Machan and collaborators [53], the number of online resources and material related to CCSVI is increasing, and peer groups are discussing this opportunity on social networks and dedicated forums. Nicoletta Mantovani herself announced she was healed after undergoing Zamboni's operation.…”

Section: Discussionmentioning

confidence: 99%

Infodemiology and Infoveillance of Multiple Sclerosis in Italy

Bragazzi

2013

Multiple Sclerosis International

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Multiple Sclerosis (MS) is a chronic debilitating disease of probable autoimmune inflammatory nature, whose aetiology is not fully understood, despite the many efforts and investigations. In this manuscript, we review the concept of “Multiple Sclerosis 2.0”, that is to say the Internet usage by MS patients, for seeking health and disease-related material for self-care and self-management purposes, and we introduce a Google Trends-based approach for monitoring MS-related Google queries and searches, called MS infodemiology and infoveillance. Google Trends has already proven to be reliable for infectious diseases monitoring, and here we extend its application and potentiality in the field of neurological disorders.

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Section: Discussionmentioning

confidence: 99%

Infodemiology and Infoveillance of Multiple Sclerosis in Italy

Bragazzi

2013

Multiple Sclerosis International

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“…Although the CCSVI hypothesis has provoked great controversy and debate in the MS research community since it was first presented [20,23,24,57-61], it gained popularity among MS patients because of the postulated possibility of venous insufficiency correction using endovascular procedures [28]. So far, there have been several contradictory studies published [28,46,49,62-68] and verified scientific evidence supportive of a causative relationship between CCSVI and MS is lacking [10,69].…”

Section: Introductionmentioning

confidence: 99%

The role of noninvasive and invasive diagnostic imaging techniques for detection of extra-cranial venous system anomalies and developmental variants

Dolić

Siddiqui

Karmon

et al. 2013

BMC Med

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The extra-cranial venous system is complex and not well studied in comparison to the peripheral venous system. A newly proposed vascular condition, named chronic cerebrospinal venous insufficiency (CCSVI), described initially in patients with multiple sclerosis (MS) has triggered intense interest in better understanding of the role of extra-cranial venous anomalies and developmental variants. So far, there is no established diagnostic imaging modality, non-invasive or invasive, that can serve as the “gold standard” for detection of these venous anomalies. However, consensus guidelines and standardized imaging protocols are emerging. Most likely, a multimodal imaging approach will ultimately be the most comprehensive means for screening, diagnostic and monitoring purposes. Further research is needed to determine the spectrum of extra-cranial venous pathology and to compare the imaging findings with pathological examinations. The ability to define and reliably detect noninvasively these anomalies is an essential step toward establishing their incidence and prevalence. The role for these anomalies in causing significant hemodynamic consequences for the intra-cranial venous drainage in MS patients and other neurologic disorders, and in aging, remains unproven.

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“…The final sample of articles represented applications of online health‐related KT strategies in six countries, with the majority of articles originating from the United States. The KT strategies utilised were quite broad, with some studies using more than one type of approach.…”

Section: Resultsmentioning

confidence: 99%

“…Knowledge management strategies [e.g. online listservs and virtual journal clubs (VJC)] were the most commonly cited approach for translating health‐related knowledge to practice ( n = 16), followed next by discussion forums ( n = 12), virtual communities of practice (VCoP) ( n = 10), blogs ( n = 6), wikis ( n = 5), Facebook ( n = 3), conferencing technology ( n = 4) and Twitter ( n = 2).…”

Section: Resultsmentioning

confidence: 99%

Online strategies to facilitate health‐related knowledge transfer: a systematic search and review

Mairs

McNeil

McLeod

et al. 2013

Health Info Libraries J

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Background: Health interventions and practices often lag behind the available research, and the need for timely translation of new health knowledge into practice is becoming increasingly important. Objective: The objective of this study was to conduct a systematic search and review of the literature on online knowledge translation techniques that foster the interaction between various stakeholders and assist in the sharing of ideas and knowledge within the health field. Methods: The search strategy included all published literature in the English language since January 2003 and used the MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), EMBASE and Inspec databases. Results:The results of the review indicate that online strategies are diverse, yet all are applicable in facilitating online health-related knowledge translation. The method of knowledge sharing ranged from use of wikis, discussion forums, blogs, and social media to data/knowledge management tools, virtual communities of practice and conferencing technology -all of which can encourage online health communication and knowledge translation. Conclusions: Online technologies are a key facilitator of health-related knowledge translation. This review of online strategies to facilitate health-related knowledge translation can inform the development and improvement of future strategies to expedite the translation of research to practice.Keywords: Health services research, Internet, knowledge management, knowledge transfer, review and systematic search Key Messages• Online strategies for health-related knowledge translation can act as vehicles to link researchers, practitioners, policymakers and consumers, thus facilitating the timely and relevant exchange of information, including where gaps in knowledge exist.• Information and communication technologies are a pragmatic and timely means to selectively transfer valuable research to policy makers, healthcare providers, the public and other stakeholders.• Information and communication technologies, particularly the Internet, have also produced knowledge translation challenges including access to and user knowledge of online technologies.• Through online technologies, it is possible for stakeholders to share knowledge regardless of geographical constraints, thus encouraging the advancement of knowledge in health and subsequent translation to practice.• Virtual communities of practice are an effective and pragmatic way for health professionals, the general public and other key stakeholders to interact and share knowledge.

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Internet-Based Social Networking and Its Role in the Evolution of Chronic Cerebrospinal Venous Insufficiency

Cited by 17 publications

References 20 publications

Infodemiology and Infoveillance of Multiple Sclerosis in Italy

Infodemiology and Infoveillance of Multiple Sclerosis in Italy

The role of noninvasive and invasive diagnostic imaging techniques for detection of extra-cranial venous system anomalies and developmental variants

Online strategies to facilitate health‐related knowledge transfer: a systematic search and review

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