Using the internet to search for clinical trial information


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Searching for Clinical Trials using and specialized search
Rob Camp goes through various online tools and search engines which enable
patients to search for clinical trials. Rob’s background includes serving as
Executive Director of the EATG (European AIDS Treatment Group), the creation
of an HIV organisation in Barcelona, the creation of national groups in Spain
and other countries (organising seminars on how to create organisations in EU
Eastern States, Southern States), leading projects supported by the European
Commission department for Public Health (DG SANCO), working on funding for
NGOs. Rob is currently working half time in the US as liaison between patient
organisations and the FDA, and spends the rest of his time in Europe. Rob
speaks English and Spanish

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Using the internet to search for clinical trial information

  1. 1. Creating RSS feeds of clinical trials to follow via RSS reader; newsletter / blog services that could be of interest to anyone thinking about participating/looking or even want to be part of a design protocol negotiation.
  2. 2. MMRW Weekly; April 23, 2010 / 59(15);461 * Estimates are based on survey data collected during January--September 2009 in response to the question, "Did you look up health information on the Internet in the past 12 months?" (Approximately 1% of those sampled did not respond to the question.) † 95% confidence interval.
  3. 3. Looking for a trial? – 88,236 trials (349 for everolimus) (rss – 17 trials open, 2 in Poland) – 84,879 trials (244 for everolimus); send questions about the study (twitter, facebook) – patient-oriented – “Discover, understand, and access clinical trials” (“online pt recruitment”) – X trials (1 for everolimus); monthly alerts – everolimus - 989 entries, 333 about trials
  4. 4. Tuberous sclerosis Found 623 sites and pages automatically retrieved by MARVIN (their robot) 4 sites subscribing to HON code 4 sites visited and described by HON ○ (uk) ○ Health on the Net Foundation, NGO, “Medical information you can trust!”
  5. 5. Nccam (NIH) Biologically-based (herbals, vitamins, organic approaches) Energy medicine (sound, electromagnetics, light) Manipulative body-based (chiro-, osteopathic, therapeutic massage) Mind-body (meditation, yoga, biofeedback, spirituality) Whole medical systems (naturopathy, homeopathy, TCM, Eastern medicines, ayurvedic medicine) (there is a newsletter) Share this page: email, bookmark, facebook, myspace, stumbleupon, digg, delicious (social bookmarking), google
  6. 6. Medline plus Interactive tutorials (pub’d by Patient Education Institute), Mobile version, what’s new, director’s comments, NIH medlineplus magazine, search cloud, follow us on twitter E-mail updates and rss feeds (subscribe using live bookmarks or adding to your home page) Cancer clinical trials: Before you start Searching for a trial After finding a trial Diagnosis checklist All accessed 27.04.10
  7. 7. RSS Really Simple Syndication news feeds makes it possible for you to put together your own customized lists of news and information. Thousands of web sites have started adding special code that allows RSS news readers to pick up the content. All you have to do is sign up with a news reader and choose the sites from which you want to get news. For FDA & NIH I have an RSS that feeds me what I want to receive. 25% of journalists receive 5 or more RSS feeds
  8. 8. I have NIH RSS feeds for news on Antimicrobial (drug resistance), Asthma, Careers at NAIAD, Centers for AIDS Research, Clinical Trials recruiting, flu/influenza, food allergy, global health, HIV clinical trials, HIV/AIDS, Malaria, NIAID and ERA, News releases, Newsletter, NIAID funding, STI’s, Policy changes, Training Career and Fellowship awards, Transplantation, TB, Vaccine research studies, viral hepatitis, hepatitis trials, volunteering for clinical trials
  9. 9. As a result… I was invited to learn more about a Crohn’s disease trial at NIH on 15 April They give you a quick inclusion/exclusion Link to more info
  10. 10. European Agency? European Medicines Agency RSS feed “Thank you for all the comments and feedback received on the Agency's RSS trial. The functionality has now been discontinued, it will be available again in the next few months as part of our new website.” (italics mine) © 1995-2009 EMEA | Contact Us | Privacy Policy | Page last updated: 20 October, 2009 (italics mine)
  11. 11. FDA reporting adv. events videos MedWatch on youtube Category: Science & Technology Tags: MedWatch FDA Medical Products Safety Concerns Adverse Events Therapeutic Failures Product Quality Issues Device Malfunctions Poor Packaging Potential Contamination Defective Components Patient Safety 0
  12. 12. FDA TRACK Dashboards – measurements It’s more than transparency, it’s accountability There are a few dozen dashboards that convey a lot of information on the progress of the agency over time. The agency is open to suggestion at any rate, on the possibility of adding new measurements. (WIP) Program areas: Advertisements &Orphan Drugs among hundreds of others RSS feeds!
  13. 13. Subscriptions The U.S. Global Health Initiative: Issues and Perspectives Toolbox Email This Page and updates RSS Feeds, twitter varaddthis_pub='kaiserfamily';varaddthis_options = 'facebook, twitter, digg, google, favorites, delicious, myspace, reddit, live, more';Share Subscribe 4/14/2010 Kaiser Family Foundation, US-centric,, last accessed 09.05.10
  14. 14. Newsletters UN Wire – a free service dedicated to supporting UN efforts to address the most pressing humanitarian, socioeconomic and environmental challenges facing the world today. Apr 26, 2010 - Gates recalibrates polio campaign, with focus on health care systems, - South Africa takes aim at HIV/AIDS
  15. 15. enacct Enhance Access To Clinical Trials In Your Community Founded in 2004 with support from the Lance Armstrong Foundation. The only national organization devoted solely to identifying, implementing and evaluating innovative community- centered approaches to cancer clinical trials education. They offer Recent news, Enacct programs, Training and Resources & (2) email updates Applying Community-Based Participatory Research Principles and Approaches in Clinical Trials: Forging a New Model for Cancer Clinical Research, has recently been published in Progress in Community Health Partnerships (PCHP), also in a “Beyond the Manuscript” podcast interview, which you can listen to at h_partnerships/multimedia.html
  16. 16. “Credible Health Information” TOPICS: Diseases and conditions, healthy living, emergency preparedness & response, injury, violence and safety, environmental health, travelers’ health, life stages and populations, workplace safety & health Multimedia & tools: widgets, rss feeds, cdc-tv, podcasts, webinars Global Health e-brief 81 hits for tuberous sclerosis, via genomics, autism, cancer… Accessed 09.05.10
  17. 17. (private?) blogs DCDE1C6625/16/dspangqMAVs Other blogs –, pharmalot, pharmagossip, in the pipeline, clinicaltrialstoday, … Euro Sites and Blogs - Euro Pharma Today, eHealthNews.EU Portal - The First European eHealth News Portal., NICE, MHRA, EMEA, WHO, HIMSS
  18. 18. facebook Novartis - 4177 fans officially (1 left while I was there) 305 fans on the Novartis page run by animal rights people RafaNadal has 2,375,406 fans After winning Monte Carlo (18.04.10, 22.46hrs), he said “I am very very happy / Muy, muycontento!” to which he got 4240 comments.
  19. 19. Personal library Free online reference management for all researchers, clinicians and scientists Completely free, no download There are relatively simple step by steps to explore, begin, account details, help, and advanced Tuberous sclerosis - there are 28 articles saved by others here, along with 20 different tags (bookmark categories), 7 savers, 4 related tags
  20. 20. ex.htm 60 “ongoing” trials on tuberous sclerosis, sp’d by NIH, hospitals, pharma No results of any trials listed (they have a separate results section) International Federation of Pharmaceutical Manufacturers & Associations, accessed 20.04.10.
  21. 21. “a rich source of instant information. Stay updated. Keep others updated. It’s a whole thing.” Customize, etc 10s of millions of users broadcasting 55 million Tweets / day. Will donate its archive of public messages to the Library of Congress. Nature Reviews Drug Discovery is now on Twitter - Adaptive trials receive boost a look @ the application of adaptive trial designs to drug development Journalists researching stories
  22. 22. The White House Twitters The White House #Malaria kills ~1,000,000/yr. Here's our 6yr strategy to fight back & #endmalaria #worldmalariaday
  23. 23. Google lists WLQI They provide maps, video previews, reviews on your list; and add urls or typing words; they suggest links These can be shared, publically or specifically Thru googlelists, they suggested, who then suggested many other sites (13 systemic lupus trials listed) Accessed on 27.04.10
  24. 24. 1) Bethesda Maryland Tuberous Sclerosis Clinical Trials Listings ... Most times the subjects receive treatment for without cost, and every ... Occasionally there is a cost for a Bethesda Tuberous Sclerosis clinical trial. …clinicaltrialssearch.orgbethesda_maryland_tuberous_sclerosis_clinical_trial… Relevancy: 100% 2) Managing Epilepsy in Tuberous Sclerosis Complex: Treatment of ... Treatment of Epilepsy in Tuberous Sclerosis Complex: Epilepsy in TSC occurs in 80-90% of affected individuals during their lifetime. Learn more about management ... Relevancy: 87% 3) Tuberous Sclerosis Treatment : Treatment Search Results on ... Find Tuberous Sclerosis treatment options on Healthline Treatment Search, including 12 Tests, 3 Medical Procedures, 2 Surgical Procedures. ... Relevancy: 87% 4) TSC Treatment, Treatment of Tuberous Sclerosis Review of TSC Treatment, Treatment of Tuberous Sclerosis. Also offers features & relevant Details. Relevancy: 87% 5) Tuberous sclerosis - Treatment Tuberous sclerosis - Treatment, Tuberous sclerosis is a group of two genetic disor... Relevancy: 81% 6) Tuberous Sclerosis - Causes, Symptoms & Treatment Tuberous Sclerosis Facts plus the Latest News on Tuberous Sclerosis Treatments - HealthNewsflash Relevancy: 81% 7) Treatment of tuberous sclerosis There is no specific treatment for tuberous sclerosis. Treatment plans should be determined on an individual basis. Relevancy: 80% 8) Tuberous Sclerosis Treatments : Learning Center on There is no specific treatment for tuberous sclerosis. Because the disease can differ from person to person, treatment is based on the symptoms. Relevancy: 80% 9) Tuberous Sclerosis: Treatment & Medication - eMedicine Neurology Treatment: In 1880, Bourneville first described the cerebral manifestations of this ... Vigabatrin in the treatment of infantile spasms in tuberous sclerosis: literature review. ... Relevancy: 80% 10) The University of Kansas Hospital - Tuberous Sclerosis The treatment for tuberous sclerosis is supportive and symptomatic. ... trial to study the effectiveness of the drug rapamycin in the treatment of tuberous ... Relevancy: 78%
  25. 25. eHealth>mHealth ChildCount+ Texting the health status of sick children to improve health monitoring, intervene faster, immunize and treat better 20,000 Nutrition screenings in 9 months – they found 500 cases of malnutrition, 2000 cases of malaria Wouldn’t be possible without a “… community of innovators, activists and friends…” Free and open-source software (RapidSMS) mhealth-thinker/ ○ UN Wire, May 6, 2010, “mHealth technologist makes Time’s list of big thinkers”
  26. 26. 3 Ways to Submit Your Ideas Attach your response and send it via e- mail to: Submit a link to your proposal via Twitter to @whitehouse and include the hashtag #whgc Send a link to your proposal via Responses are due April 15th.
  27. 27. Google transparency Google unveiled a new tool that reports on gov’t requests to remove material and data on users. It should promote a more informed discussion about government monitoring of the Internet. Future: other companies? The number of requests for information from various countries between July 1 and Dec. 31, 2009. broken down by country, and if you click on a specific country, you get details like what percentage of requests for data removal the company complied with. Editorial, Google and Government Monitoring, published May 1, 2010, accessed 1.5.2010.
  28. 28. Facebook and your privacy Since its incorporation just over five years ago, Facebook has undergone a remarkable transformation. When it started, it was a private space for communication with a group of your choice. Soon, it transformed into a platform where much of your information is public by default. Today, it has become a platform where you have no choice but to make certain information public, and this public informationmay be shared by Facebook with its partner websites and used to target ads. Facebook originally earned its core base of users by offering them simple and powerful controls over their personal information. As Facebook grew larger and became more important, it could have chosen to maintain or improve those controls. Instead, it's slowly but surely helped itself — and its advertising and business partners — to more and more of its users' information, while limiting the users' options to control their own information. Electronic Frontier Foundation,, accessed 2.5.10.
  29. 29. Why do we have to do all this? Multitasking, etc Community has to have a role in therapy development. If we don’t define and take charge of that role, it will be decided for us. There are pressing needs of people living with diseases; research volunteers need to be protected; even the word “community” is complex; advocating for specifics for trials; helping find innovative solutions; making design & conduct of trials more transparent
  30. 30. NO 1 IS GONNA DO IT 4 U
  31. 31. BACK UP SLIDES
  32. 32. NIH A 55-year-old clinical-trials network needs a major overhaul, according to a report by the Institute of Medicine, the Washington DC-based health arm of the National Academies. The Clinical Trials Cooperative Group Program, funded by the National Cancer Institute, enrolls 25,000 patients in cancer trials run by 14,000 researchers at 3,100 institutions each year. Trials typically take at least two years to get off the ground, the report says, and funding only covers about half the costs, leaving investigators to seek out the difference from other sources. Nature, News briefing, Published online 21 April 2010 | Nature 464, 1108- 1109 (2010) | doi:10.1038/4641108a
  33. 33. Messaging Audiences choose the news, not vice versa Messages must be relevant (nix the time capsule), concise (bare components), consistent and memorable (understandable, not much nuance) Eye on FDA, 04 May 2010 04:11 AM PDT
  34. 34. facebook Friend or what? GlaxoSmithKline is on facebook (19.04.10) Their 10th latest addition is their 2009 Corporate Responsibility Report (I tried to open it from facebook, not possible.) They have 3254 fans, of whom 9 gave thumbs up for the report. 2 with photos said, “Go GSK!!” and “It’s immpresive!”, sic
  35. 35. The White House Wants to Hear from You As a part of its efforts to introduce fully open government, the White House is reaching out to the at-large scientific community to discuss America's national scientific and technological priorities. Through AAAS, and our new Expert Labs program, the Obama administration wants to draw on the collective wisdom of scientists everywhere in deciding which scientific and technological challenges should be the focus of policy initiatives in the coming years. In 2009 President Obama provided some examples of what these challenges might be: Complete DNA sequencing of every type of cancer; smart anti-cancer therapeutics that kill cancer cells and leave their normal neighbors untouched; early detection of dozens of diseases from a saliva sample; nanotechnology that delivers drugs precisely to the desired tissue; personalized medicine that enables the prescription of the right dose of the right drug for the right person; a universal vaccine for influenza that will protect against all future strains; and regenerative medicine that can end the agonizing wait for an organ transplant. Solar cells as cheap as paint, and green buildings that produce all of the energy they consume. A light-weight vest for soldiers and police officers that can stop an armor-piercing bullet. Educational software that is as compelling as the best video game and as effective as a personal tutor; online courses that improve when more students use them; and a rich, interactive digital library at the fingertips of every child. Intelligent prosthetics that will allow a veteran who has lost both of his arms to play the piano again. Biological systems that can turn sunlight into carbon-neutral fuel, reduce the costs of producing antimalarial drugs by a factor of 10, and quickly and inexpensively dispose of radioactive wastes and toxic chemicals. An “exascale” supercomputer capable of a million trillion calculations per second – dramatically increasing our ability to understand the world around us through simulation and slashing the time needed to design complex products such as therapeutics, advanced materials, and highly efficient autos and aircraft. Automatic, highly accurate and real-time translation between the major languages of the world – greatly lowering the barriers to international commerce and collaboration.
  36. 36. To Participate You can help the White House determine which scientific and technological challenges to prioritize as well as advocate for your own areas of research if you feel that significant breakthroughs are possible. First, create a succinct description of a grand challenge, and optionally include metrics of progress, suggested ideas of who could lead the project, or techniques that could be used to accomplish the goal. Then, share that idea with the White House via e-mail to, or by replying to the White House's call to action on Twitter or Facebook with a link to your Grand Challenges submission. Finally, encourage your peers, friends, and family to participate in the dialogue as well, either by amplifying your submission or contributing ideas of their own. Now, the White House wants your help in shaping the federal government’s current and future scientific priorities. As scientists and concerned citizens, we have a great responsibility and a unique opportunity to be the voices that are helping to define the White House's scientific agenda. Make your voice heard. Submit your ideas today.
  37. 37. Health Literacy Read%20NYC.pdf • 17363939 healthlit/healthlit_resources.html
  38. 38. Share/bookmark Connotea Cite U Like Facebook Twitter Delicious Digg