|Year : 2009 | Volume
| Issue : 1 | Page : 17-27
Endocrinological cancers and the internet
HK Bid1, R Konwar1, S Kumar2
1 Endocrinology Division, Central Drug Research Institute, Lucknow, India
2 Department of Surgery, King George's Medical University (KGMU), Lucknow, India
Department of Surgery, King George's Medical University (KGMU), Lucknow
Source of Support: None, Conflict of Interest: None
Endocrine cancers are some of the commonest forms of cancer getting mention as early as in old papyruses of Egypt. Our current knowledge about this cluster of cancer has grown immensely with improved survival rates. In the era of specialization and super specialization, we started peeking into these conditions more elaborately and beyond microscopically. The growing awareness demanded categorization of information into disease basics like molecular pathology of initiation and progression; advanced diagnostics; new therapeutic options; patient awareness and involvement in clinical trials. Recent advances in genomics and hereditary counseling have delineated pre-disease forecasting possibilities. With advanced diagnostics and therapeutic modalities, we saw an increase in cancer survivors demanding extra care and moral support. Throughout these developments, we went through a boost in global information communications, the main thrust being the Internet. Networking of computers globally generated a platform that created a ripple of knowledge far and wide. The purpose of this review is to investigate how the Internet is supporting the growth and development of the field of endocrine cancer, and present and future scope of the Internet as a tool for professionals involved in this area. The information furnished here were collected from cited references as well as all websites mentioned in the tables.
Keywords: Endocrine cancer, the internet, website
|How to cite this article:|
Bid H K, Konwar R, Kumar S. Endocrinological cancers and the internet. Indian J Cancer 2009;46:17-27
| » Introduction|| |
The Internet is the most important communication innovation of the past few decades, providing access to large amounts of information relevant to health services and thus obviously also becoming an increasingly important source of information on cancer. In the past few years, numerous Internet resources on endocrine cancers have been published, including medical journal articles and clinical trial registries. These have already proven their significant role in dissemination of varied levels of information for all strata of people involved in the area of endocrinological cancers, from patients to expert specialist clinicians.
The Internet is inundated in our time with a huge array of information and inevitably set off a revolution in healthcare research and services. Medical practitioners and basic scientists today not only regularly review and evaluate relevant Internet sites, but also offer advice with accurate and up-to date information and share experiences with their colleagues. More importantly, cancer patients who seek information about their problems are the most important beneficiaries from the Internet. They use the Internet to enhance their medical care by using online information search and help the clinician in diagnosing their problem. Besides, the Internet has provided a more secure and private forum for information that they often found difficult to describe or discuss with clinicians for some reason. A recent survey found that 58% of people who accessed the Internet during a health crisis of a loved one, reported that they found important health related information from the Internet.  Another study reported that people who searched for information about a personal health problem were 60% more likely to contact a health professional compared to other people who had not searched for online information. 
Apart from the impact of online information on physician-patient communication, there is also evidence of the positive effects of the Internet and computer-based support on knowledge and overall satisfaction, health status, health care utilization, question asking, treatment compliance, and psychological benefits such as greater social support and less loneliness of patients. ,,,,, However, the availability of an enormous amount of information may make it challenging for people suffering with cancer to comprehend and to apply it to their own situation.
While there is consensus about the importance of web resources and their availability on the Internet, there is lack of comprehensive reviewing on available web resources relevant to endocrinological cancers including basic information, therapy advancement etc. This article highlights major sites of credible information on endocrinological cancer and describes the types of information available on these sites. This compendium on Internet sources for cancer information, especially endocrine cancer, is likely to provide a handbook for clinicians, cancer researchers, government regulators, public watchdogs and cancer patients, survivors and their caregivers. All information furnished in the article was collected from cited references and web addresses described in various tables of this review.
| » Internet Resources for Researchers of Endocrinological Cancers|| |
Researchers involved in the area of endocrine cancers may be basic scientists who may include specialists in chemistry, pharmacology, cell biology, genetics, histopathology, bioinformatics, drug research and development etc. The Internet provides relevant information to all of these categories, which is summarized in [Table 1],[Table 2],[Table 3]. Various organizations and societies serving in the area are listed in [Table 4]. Here we review a few of the important web resources in detail.
The first multimedia World Wide Web (WWW) and gopher server focusing on cancer information for both the health care professional and the patient. OncoLink provides an Internet-based hypertext and multimedia resource for linking people, computers and information together in an easy to use fashion. 
OncoLink has two major goals: a) To provide quality, original content for cancer patients and healthcare professionals and (b) to provide well-organized, consistent access to existing Internet cancer resources. OncoLink service is rich in multimedia content, containing text, pictures, illustrations, sound, and video. The information includes (i) original content written by authors at the institution, (ii) original content submitted by authors from other institutions and, (iii) publicly available information from other resources. Patient-oriented articles, physician-oriented review articles, and NIH, NCI, and FDA documents are also available through this link.
Oncomine combines a rapidly growing compendium of more than 20,000 cancer transcriptome profiles with a sophisticated analysis engine and a powerful web application for data mining and visualization. Oncomine facilitates rapid and reliable biomarker and therapeutic target discovery, validation and prioritization. It was developed by physicians, scientists, and software engineers at the University of Michigan and is now fully supported for the academic and non-profit research community by Compendia Bioscience. 
Drug discovery tools
Fang et al . (2004) described the development of a set of integrated Web-based tools for mining the National Cancer Institute's (NCI) anticancer databases for anticancer drug discovery.  These Web-based data mining tools allow robust analysis of the correlation between the in vitro anticancer activity of the drugs in the NCI anticancer database, the protein levels and mRNA levels of molecular gene targets in the NCI 60 human cancer cell lines for identification of potential lead compounds for a specific molecular target and for study of the molecular mechanism action of a drug.
A comprehensive herbal medicine information system for cancer (CHMIS-C) has also been developed. The current version of the database integrates information on more than 200 anticancer herbal recipes that have been used for the treatment of different types of cancer in clinic, 900 individual ingredients, and 8500 small organic molecules isolated from herbal medicines. Fang et al. (2005) demonstrated that this comprehensive information system might be used as an effective informatics tool for anticancer drug discovery. 
Genomics web resources
The National Cancer Institute's Cancer Genome Anatomy Project (CGAP) is developing publicly accessible information, technology, and material resources that provide a platform for the interface of cancer research and genomics.  CGAP is a collaborative network of cancer researchers with a common goal: to decipher the genetic changes that occur during cancer formation and progression. 
caCORE is open source software and services developed by the NCICB Core Infrastructure Group. Providing a data management and application development framework caCORE-based systems include the semantic underpinning for interoperable data and analytical services. 
The cancer Biomedical Informatics Grid, or caBIG (http://caBIG.nci.nih.gov), is an informatics infrastructure. It link teams of cancer and biomedical researchers together to enable them to better develop and share tools and data in an open environment with common standards. CaBIG is creating a voluntary virtual network also called 'grid' that links individuals and institutions nationally and internationally, effectively forming a World Wide Web of cancer research. CaBIG will allow researchers to answer research questions more rapidly and efficiently, thereby promising to accelerate progress in all aspects of cancer research - from etiologic research to prevention, early detection and treatment. 
BRACA or Breast Cancer associated antigens are high penetrating genetic markers of breast and ovarian cancer. Their mutation for loss of function results in high risk of such cancer which can be screened by DNA testing. BOADICEA is a model under which susceptibility to breast and ovarian cancer is explained by mutations in BRCA1 and BRCA2, as well as multiplicative effects of many genes of polygenic component. A birth cohort effect on the cancer risks was implemented, whereby each individual was assumed to develop cancer according to calendar period-specific incidences. The fitted model predicts that the average breast cancer risks in carriers increase in more recent birth cohorts. The model was further extended to take into account the risks of male breast, prostate and pancreatic cancer, and to allow for the risk of multiple cancers. BOADICEA can be used to predict carrier probabilities and cancer risks to individuals with any family history, and has been implemented in a user-friendly Web-based program in web address http://www.srl.cam.ac.uk/genepi/boadicea/boadicea_home.html. 
Molecular pathways and mechanisms underlying endocrine cancers are being continuously investigated in different in vivo models. A critical part in such investigations is the evaluation of organ integrity and histology upon the alteration or inactivation of specific genes. The printed image does not permit an easy comparison of histological images published in different journals over the years. The Internet is now providing tools for the timely and inexpensive dissemination of scientific data to the research community. Web-based interactive histology Atlas More Detailses as available in http://histology.nih.gov and http://www.uwo.ca/pathol/resources.html making possible the retrieval of annotated question banks and high-resolution histology images are excellent resources on the Internet. These histology atlases also take advantage of the interactive nature of the Internet to support the communication between different research groups. They also provide the platform for professionals to evaluate and understand cancer pathology, and to develop a consensus between veterinary and human pathologists.  Killeen et al . published a review on Internet resources for molecular pathology that described several currently available resources. 
Computational modeling of mammalian cell cycle regulation is a challenging task, which requires comprehensive knowledge of many interrelated processes in the cell. Cyclonet database is a web-based integrated database on cell cycle regulation in mammals in normal and pathological states. It integrates data obtained by all 'omics' sciences and chemoinformatics on the basis of systems biology approach. Cyclonet is a specialized resource, which enables researchers working in the field of anticancer drug discovery to analyze the wealth of currently available information in a systematic way. Cyclonet contains information on relevant genes and molecules; diagrams and models of cell cycle regulation and results of their simulation; microarray data on cell cycle and on various types of cancer, information on drug targets and their ligands, as well as extensive bibliography on modeling of cell cycle and cancer-related gene expression data. Cyclonet aims to predict promising anticancer targets and their agents by application of Prediction of Activity Spectra for Substances. The Cyclonet database is available at http://cyclonet.biouml.org.
Mouse tumor biology database (MTB)
MTB provides public access to information about endogenously arising tumors (both spontaneous and induced) in genetically defined mice (inbred, hybrid, mutant and genetically engineered mice). This includes information on the frequency and latency of mouse tumors, pathology images and reports, genomic changes occurring in the tumors, strain background and literature or contributor citations. This database is assembled from the primary literature or submitted directly from researchers. MTB can also be accessed via the Mouse Genome Informatics web site ( http://www.informatics.jax.org ). Integrated searches of MTB are enabled through use of multiple controlled vocabularies and by adherence to standardized nomenclature. 
Recently systems biology approach is being advocated by leading researchers particularly for multifactorial multigenic disorders to understand, manage for application of comprehensive data on a particular condition. A 'systems' approach towards integrating signaling pathways, interaction and transcriptional regulatory networks in inflammation and cancer (http://pstiing.licr.org) is a new publicly accessible web-based application and knowledgebase. It features 65,228 distinct molecular associations comprising protein-protein, protein-lipid, protein-small molecule interactions and transcriptional regulatory associations, ligand-receptor-cell type information and signal transduction modules for understanding and employing basic scientific information on cancer. It has particularly focused on regulatory networks relevant to chronic inflammation, cell migration and cancer.
Besides the above specific websites we have also listed the center/institutes involved with advanced research in cancer prevention, diagnosis, therapy development in [Table 5].
| » Internet Resources for Endocrine Cancer Patients|| |
Cancer patients are increasingly using the Internet as a source of medical information. This is a reflection of the overall availability of computers and access to the Internet. Forty to fifty percent of cancer patients use the Internet to search for information, and this number continues to rise. , There is a fairly large literature on Internet resources available to endocrine cancer patients. While the National Cancer Center website is taking the lead in providing general cancer information, the local cancer based hospital websites are expected to provide the individualized information that patients would require.  However, the utility of websites for cancer patients needs improvement. Specifically, it is important to better understand how patients access health information online and their associated preferences so that we can improve cancer patients' access to high quality health information on the Internet to facilitate decision-making and health outcomes. Recently, Huang et al . (2008) reviewed the current state of the Internet health resources available to the cancer patient and recommended several areas for future research. 
| » Internet-Based Clinical Trials of Cancer Drugs|| |
Clinical trials are a cornerstone for deciding future cancer patient management. They provide patients with opportunity, good clinical practice and, for some, a sense of altruism. That information on cancer clinical trials is expected to be accurate and appropriate with a strong ethical basis. Increasingly, many patients and their families are looking for information from the Internet regarding cancer clinical trials. , The content and form of information available to patients is critical for decision making. Information must be readable, provide essential detail, and be understandable and easily accessed. A recent study has reviewed such available information on clinical trials by accessing seven cancer information sites.  Another study by Metz et al . (2005) describes one of the first Web-based cancer clinical trials matching resources and the demographics of users who were successfully matched.  [Table 6] lists a few important cancer registries worldwide involved in clinical trials and also provides updated information on ongoing clinical trials of specific therapy regimes. Besides information about clinical trials, a site like National Comprehensive Cancer Network provides "NCCN Clinical Practice Guidelines in Oncology TM", a compilation of clinical guidelines for practice on endocrine and other cancers.
Recently, a number of services have been offered over the Web to facilitate enrollment in clinical trials. The increasingly widespread use of the Internet makes it a potential source by which patients can be made aware of and enrolled in clinical trials, thus improving the rate of clinical trial enrollment. However, there are concerns that rural and elderly patients are less familiar and/or have limited access to the Internet. ,
| » The Internet as Resource for Cancer Survivors|| |
Many endocrine cancer patients use the Internet to find reliable information about their disease and treatment. Patient information centers from hospitals should be strongly encouraged to improve disease and treatment information facilities on their hospital Web site, especially since most patients still view their oncologist as the most important source of information. 
Michael et al . (2006) investigated research-based strategies used in a web-based study to assess the impact of participation in cancer-related mailing lists on cancer survivors and caregivers. They also highlighted the alternative methods of measuring response rates in Internet surveys. 
| » Challenges and Limitations|| |
Along with its enormous opportunities, the Internet also poses many daunting challenges and problems. With rise of numerous healthcare websites, clinicians and patients have more information than ever to wade through; even the volume of information it contains can be exhausting to search for specific needs. Unfortunately, many of these sites contain incomplete, misleading, or difficult to understand information, while others blur the distinction between advertising, medical advice and simple disclosure of fact. At present, spurious healthcare Web sites outnumber the trustworthy ones, commonly those of universities, medical centers, and government agencies. Some patients consider online consultations as substitutes for a physician's visit, ignoring the disclaimers that Internet information is no substitute for medical practice.
| » Conclusion|| |
Finally, we conclude with that there is a significant potential for providing guidance to patients regarding accessing reliable and authenticated sources of Internet information on endocrine cancer related information. Thus, our review of Internet resources on endocrine cancer is intentionally general and all encompassing; no review can substitute for the user actually accessing a Web site and exploring its contents. Although many sites offer high quality information, the user should carefully assess each information site based on the authors' credentials, nature of editorial board, involvement of independent medical experts, frequency of information update, source of funding and potential conflicts of interest of the website etc. For example, Air et al . (2007) reported that thyroid cancer websites are out of date and incomplete, lacking important information sought by patients, particularly surgical information.  Finally, there is also a need to formulate universal guidelines and strict cyber law and sincere public effort to maintain genuine information on such a life-threatening condition as cancer.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]