Searching for Clinical Trials using clinicaltrials.gov and specialized search engines 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

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. 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. Looking for a trial?
www.Clinicaltrials.gov – 88,236 trials (349
for everolimus) (rss – 17 trials open, 2 in
Poland)
www.Trialreach.com – 84,879 trials (244
for everolimus); send questions about the
study (twitter, facebook) – patient-oriented
– “Discover, understand, and access
clinical trials” (“online pt recruitment”)
www.Clinicalresearch.com – X trials (1 for
everolimus); monthly alerts
www.Pubmed.gov – everolimus - 989
entries, 333 about trials

4. www.Hon.ch
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
○ Tuberous-sclerosis.org (uk)
○ Health on the Net Foundation, NGO, “Medical information you
can trust!”

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)
http://nccam.nih.gov (there is a newsletter)
http://nccam.nih.gov/research/clinicaltrials
Share this page: email, bookmark, facebook, myspace,
stumbleupon, digg, delicious (social bookmarking), google

6. Medline plus
http://www.nlm.nih.gov/medlineplus/
Interactive tutorials (pub’d by Patient Education Institute),
www.clinicaltrials.gov
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:
www.cancer.gov/clinicaltrials/finding/treatment-trial-guide
Before you start
Searching for a trial
After finding a trial
Diagnosis checklist
All accessed 27.04.10

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. 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. 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. 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. 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
http://www.youtube.com/watch?v=ocy95iCS07g&feature=related
http://fda.gov/medwatch
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/psn/transcript.cfm?show=97#1
0

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!
http://www.fda.gov/AboutFDA/WhatWeDo/track/default.htm

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, www.kff.org, last accessed 09.05.10

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
http://www.smartbrief.com/un_wire/index.jsp

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
http://www.press.jhu.edu/journals/progress_in_community_healt
h_partnerships/multimedia.html

16. www.CDC.gov
“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
http://www.cdc.gov/washington/globalhealth_ebrief.html
81 hits for tuberous sclerosis, via genomics, autism, cancer…
Accessed 09.05.10

17. (private?) blogs
www.eyeonfda.com
http://www.youtube.com/watch?v=RBvfNYFeRoE
http://www.youtube.com/user/eyeonfda#p/c/16F523
DCDE1C6625/16/dspangqMAVs
Other blogs – drugwonks.com, 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. 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. Connotea.org
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. www.ifpma.org
http://clinicaltrials.ifpma.org/en/myportal/ind
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. “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 -
http://twitter.com/NatRevDrugDisc
Adaptive trials receive boost http://bit.ly/d5rkGN a
look @ the application of adaptive trial designs to
drug development
Journalists researching stories

22. The White House Twitters
The White House #Malaria kills
~1,000,000/yr. Here's our 6yr strategy
to fight back &
#endmalariahttp://bit.ly/awMQbO
#worldmalariaday

23. Google lists
http://www.youtube.com/watch?v=WedMuGn
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
centerwatch.com, who then suggested many
other sites (13 systemic lupus trials listed)
Accessed on 27.04.10

24. www.searchcloud.net
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 ...
www.medscape.com/viewarticle/495644_4 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. ...
www.healthline.com/treatments/tuberous-sclerosis__ Relevancy: 87%
4) TSC Treatment, Treatment of Tuberous Sclerosis
Review of TSC Treatment, Treatment of Tuberous Sclerosis. Also offers features & relevant Details.
www.habibintl.com/tsc-treatment.htm Relevancy: 87%
5) Tuberous sclerosis - Treatment
Tuberous sclerosis - Treatment, Tuberous sclerosis is a group of two genetic disor...
www.umm.edu/ency/article/000787trt.htm Relevancy: 81%
6) Tuberous Sclerosis - Causes, Symptoms & Treatment
Tuberous Sclerosis Facts plus the Latest News on Tuberous Sclerosis Treatments - HealthNewsflash
healthnewsflash.com/conditions/tuberous_sclerosis.htm Relevancy: 81%
7) Treatment of tuberous sclerosis
There is no specific treatment for tuberous sclerosis. Treatment plans should be determined on an individual basis.
neurology.health-cares.net/tuberous-sclerosis-treatment.php Relevancy: 80%
8) Tuberous Sclerosis Treatments : Learning Center on Healthline.com
There is no specific treatment for tuberous sclerosis. Because the disease can differ from person to person, treatment is based on the symptoms.
www.healthline.com/channel/tuberous-sclerosis_treatments 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. ...
emedicine.medscape.com/article/1177711-treatment 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 ...
www.kumed.com/healthwise/healthwise.aspx?DOCHWID=nord35 Relevancy: 78%

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)
http://mobihealthnews.com/7481/time-magazine-100-includes-
mhealth-thinker/
○ UN Wire, May 6, 2010, “mHealth technologist makes Time’s list of big thinkers”

26. 3 Ways to Submit Your Ideas
Attach your response and send it via e-
mail to: challenge@ostp.gov
Submit a link to your proposal via Twitter
to @whitehouse and include the
hashtag #whgc
Send a link to your proposal via
Facebook.com/whitehouse
Responses are due April 15th.

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. 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,
http://www.eff.org/deeplinks/2010/04/facebook-timeline, accessed 2.5.10.

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. NO 1 IS GONNA DO IT 4 U

31. BACK UP SLIDES
camporama@gmail.com

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. 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. 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. 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. 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
challenge@ostp.gov, 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. Health Literacy
www.centerforplainlanguage.org
http://www.nyc.gov/html/oath/pdf/Easy-to-
Read%20NYC.pdf
• http://execsec.od.nih.gov/plainlang/intro.html
http://www.plainlanguagenetwork.org/
http://www.ncbi.nlm.nih.gov/pubmed/
17363939
http://www.mlanet.org/resources/
healthlit/healthlit_resources.html

38. Share/bookmark
Connotea
Cite U Like
Facebook
Twitter
Delicious
Digg