CancerGuide: Clinical Trials and Experimental Treatments
The following list is not intended to be a comprehensive list of Internet clinical trial sources, but rather a guide to the most comprehensive and worthwhile sites I've come across. If you know of a site you think deserves to be listed here, please write me at firstname.lastname@example.org.
For in depth information on how the clinical trial system works, see my article on Understanding The Clinical Trial System.
Note: All links in this page will open a new window so you can easily check out a site and then continue your search here.
General Non-Profit Clinical Trial Resources
PDQ Clinical Trials Database at the National Cancer Institute's Cancer.gov
The US National Cancer Institute's PDQ Clinical Trial Database contains information on over 1700 open clinical trials, mostly in the US. Despite this, there are many clinical trials in the US which are not listed in this database. While the database does contain all NCI funded studies, it's missing many independent studies funded by drug companies and many studies being done independently at various hospitals and cancer centers.
There are actually two different summaries for each trial - a patient and a professional version. Each links to the other and you can select which you'd like returned to start with in the search form. I advise starting with the patient versions and then going to the professional versions to get more details. If you are interested in particular trials you should be sure to print the professional version to show your doctor.
The NCI redistributes its database to quite a few other clinical trials sites, so you are likely to encounter these same trials elsewhere if you visit other clinical trial sites. Often almost all the trials on other sites are from this database which makes it hard to find any trials for your situation unique to that site.
Cancer.gov's clinical trials home page is an excellent source of information on clinical trials in general.
Cancer Information Service
Although you can (and should) search by your type and stage of cancer, it can be difficult to determine which trials you might qualify for because details of patient eligibility rules tend to be quite technical. There is another alternative. The NCI's Cancer Information Service at (800)4-CANCER has representatives who will do a custom search based on your specific information, but I have found in the past that they often limit their searches by geographic region which is highly undesirable if you are a patient who will do Whatever It Takes to get well, travel included. My experience is that they can usually be talked into searching for trials regardless of region. The CIS also has a service called livehelp which lets you chat online with a cancer information specialist to get help meeting your cancer information needs including finding clinical trials. [Reviewed Sept 02]
ClinicalTrials.gov is the US government's central clinical trials registry. It includes trials for many disease conditions including cancer and it includes all of the trials in the NCI's PDQ database plus others. Because of a 1997 FDA Modernization Law, most clinical trials are required to be registered in a public database. ClinicalTrials.gov is that database! But implementation of this law is just starting, so at present we cannot look to this database as a comprehensive source for clinical trials. We may be able to in the not too distant future and this is likely to become the most comprehensive source for clinical trials. Meanwhile it does contain some trials PDQ doesn't.
The database entries include a link out field where the trial sponsor can put more detailed information, and a citation field where sponsors can add references to relevant technical literature. These are both excellent features which so far are sparsely used, except that for trials which are also in the NCI's PDQ, the link out field is used to link back to PDQ's database entry.
Searching is this database's weak point. ClinicalTrials.gov is more difficult to search than PDQ, or for that matter most of the other databases. The search is free form and this makes it hard to know the best term to use to find your cancer and there is no specific mechanism to search by stage. Using the "focused search" option does give you more control over the search and I recommend it especially for the more common cancers. Be alert to whether your search is returning results specific to your type of cancer, and be prepared to filter them by stage. You may be able to search by stage by including this in the condition field (Example: stage III breast cancer) but I suspect the database may not be rigorously and correctly indexed by stage so I am not sure this will return all relevant trials. For rare cancers, the "browse by condition" option should do a good job, but this search option will return an overwhelming number of trials for many of the more common cancers. [Reviewed Sept 02]
Radiation Oncology Therapy Group (RTOG) Trials
RTOG is a cancer cooperative research group focusing on radiation therapy. All of the RTOG trials are in the NCI's PDQ database, however what distinguishes RTOG's offering is that they make the complete protocol document for every RTOG trial freely available to everyone. The protocol document is the complete technical plan for the trial including all the treatment details and a history of the treatment including references to the medical literature. If you're investigating an RTOG trial, this is a great source. [Reviewed December 02]
UKCCCR Clinical Trials Registry
The UKCCCR Clinical Trials Registry is a substantial database of British randomized clinical trials. The site has a unique and sophisticated search engine and actually includes some references to published data relevant to the treatments under test. I highlight this because to my knowledge this is the only hint of efficacy information given in any cancer clinical trials database anywhere. The major limitation is that only randomized trials are included. An important hint: This database includes many trials which have already finished accruing patients - be sure to use the "Status/Centres" option to limit the search to open trials. Another peculiarity is that the names of the doctors running the trial are not given to general users (health care professionals can get access to this data) so that you may need to get your doctor to use this database to get the information for you if you are seriously interested in any of the trials.
European Organization for Research and Treatment of Cancer (EORTC)
EORTC is the major European cancer research cooperative group. They have a fairly extensive listing of European Clinical Trials. Click on "Protocols" on the navigation pane to get to their database.
General Commercial Clinical Trial Resources
There has recently been (12/2000) a proliferation of commercial clinical trial sites. Coverage at these sites tends to be quite thin and you should never assume that a search at one of these sites is a comprehensive site. At the same time, any of these sites may contain trials, especially drug company sponsored trials, not found in the non-profit databases.
In addition, often trial sponsors pay to have their trials listed in these sites or pay for each referral. You should pay close attention to what the policies are in any of these web sites since you need to know if you are, in effect, being steered to particular trials for financial reasons.
The 411cancer.com clinical trials database is a useful database of industry sponsored cancer trials maintained by 411cancer.com, which also has much additional useful information about cancer. As of this writing (April 2000), the database is fairly small but trials there may not be listed in other databases such as PDQ, so it's definitely worth a visit. One good feature is a brief "overview" of each trial which actually describes what the trial is about in what begins to approach enough detail to be useful.
They also offer free searches by an oncology Nurse who will search their database as well as the NCI's PDQ. They will call experts they know who may be conducting promising trials.
Disclosure: I am an unpaid advisor to EmergingMed
Emerging Med has an innovative system for matching you to trials for which you might qualify. Their patented clinical trial matching service helps patients find trials specific to their diagnosis, stage, symptoms, and treatment history. Matching can greatly narrow the number trials to choose from which is very helpful if you're feeling overwhelmed by the number of trials for your cancer.
Hints for using the matching system:
Their database includes a significant number of drug company trials not found in NCI's PDQ database as well as all the trials in that database (include the health professional version). After discovering that contact information in NCI's database is often inaccurate, they have gone to great trouble to verify this information for every trial which is a major plus.
Emerging Med also has some general information on the clinical trial system, and specific diseases and treatments. You should also be sure to check their "therapies in development" for your type of cancer - you may learn of promising new options - though deep investigation of the actual data will be required to follow up on these leads. [Reviewed October 02; updated Jan 2013]
Cancer Trials Help
Cancer clinical trials provide patients at all stages of cancer with the most cutting edge medical treatment and the highest level of care. The nonprofit, Coalition of Cancer Cooperative Groups' newly enhanced website, www.CancerTrialsHelp.org, features navigation tools, rich with dynamic resources that can help answer essential questions about cancer clinical trials and provides the resources to pursue options with a physician.
Find a Cancer Clinical Trial (www.cancertrialshelp.org/trialcheck)
TrialCheck(r), used by American Cancer Society and Web MD, is a nonbiased cancer clinical trial matching service with precise screening that locates trials near patients' homes. This free system was developed by a nonprofit with the goal to make the clinical trial process more accessible for patients. [PF 1/09]
CenterWatch maintains a general database of clinical trials. This is not limited to cancer clinical trials, but cancer clinical trials are included. With CancerWatch you can also sign-up to be notified by E-Mail whenever a new clinical trial for your cancer is added to their database. CenterWatch is the grandaddy of commercial clinical trials sites, but they don't have many trials for most cancers. You might not think so if you just looked at the number of trials they claim, however they count each location for a multicenter trial as a separate "trial", which is misleading. Unlike many other sites, they do not include the NCI trial database so as long as you don't take their listing to be a complete list of available trials, they have the advantage that you don't have to sort through a vast number of NCI trials to find the few unique ones as is the case with many other commercial databases.[Reviewed Sept 02]
Clinical Trial Resources for Particular Situations
Brain Tumor Clinical Trial List
Al Musella's site for Clinical Trials and Noteworthy Treatments for Brain Tumors is diligently maintained and contains a wealth of information. Highly recommended!
Pancreatica's Database of Clinical Trials for Pancreatic Cancer
Pancreatica, includes a hand compiled database of clinical trials for pancreatic cancer which far exceeds any other source I've seen for this cancer, including the NCI! Their database includes references to the scientific literature for each trial - a valuable and virtually unique feature. Information on entry criteria and trial design is a little thin, so you'll want to see if you can hunt up more information on the trial sponsor's web site (if available) or take a look at the entry in NCI's database for those trials which are covered in both places. Pancreatica is non- commercial and unbiased. [Reviewed Feb 02]
KidneyCancerTrials.Org: The Renal Cell Cancer Evaluated Trials Database
The Renal Cell Cancer Evaluated Trials Database is a small selection of clinical trials for the common form of kidney cancer. It makes no attempt to be a comprehensive list of all trials for renal cell cancer. What makes it different is that this gathers as much research as possible about each trial including prior results and even patient stories, and offers an opinion on each trial. I think it's great! (And now for one very small confession - it's my project!) [Reviewed Aug 02]
Finding Company Sponsored Trials
There are a lot of trials sponsored by for profit companies and coverage of these trials in the regular databases is thin (though improving with the advent of ClinicalTrials.gov) These trials include some of the most innovative new biotech drugs so they are important. But for some reason companies often do not get their trials listed in the NCI database, and the commercial trials databases often list trials not in the NCI database only if they've been paid or at least if the company has specially gone out of their way have its trials listed. Fortunately there are some excellent ways to find company clinical trials.
The Phrma Database of New Drugs In Development
Phrma is an American pharmaceutical industry trade group with some important information on drugs in development. The Phrma New Medicines in Development Database is a rather comprehensive list of drugs in clinical testing which can be queried by disease. This isn't a database of clinical trials, but given the company name and the drug name you can easily find the company web site to get more information including information on clinical trials now in progress.
How To Find Individual Company Websites
Of course these days every company has a web site so if you have the name of a company or their drug you can likely use Google to find the company's web site. Often the name of the drug is enough to lead you to the name of the company even if the company's site doesn't show up high in the list of results. If so a search on that name will get you to the company's site.
A Few More Thoughts on Biotech Company Web Sites
There are numerous small, and not so small, companies with cancer drugs in development - many can be found through the Phrma and BioSpace databases described above, but I know of no comprehensive database of biotech company sponsored clinical trials, and yet most of these trials are not in the other databases. You may also hear of specific drugs through the media - newspapers, television, radio and internet (For advice on how to research "breakthroughs" reported in the Media, Click Here.) Virtually every single biotech has a web site which describes the drugs they are researching, often with excellent detail on how each drug actually works, and on what the results are to date, as well as info on open clinical trials, all at a level intended to be comprehensible to the intelligent layman. The information on mechanism and prior results usually far exceeds the information found in any of the public clinical trial databases - and should in part be a model for the kind of information that should be readily available, but almost never is.
The downside is that these companies are always trying to gain favor with investors, and so often their reports on clinical results are given a simply monumental amount of positive spin (the results are often found in the press release section of the web site). A skeptical eye for things like tiny very preliminary trials, prospectively defined endpoints versus retrospective sub- group analysis, and lack of any real proof of a significant clinical benefit is definitely needed. You should always try to track down published papers and meeting abstracts for a more complete view. The sites will usually reference presentations and papers, but a medline search and a meeting abstract search may turn up more. Sometimes, unfortunately, the press releases are the only publicly available data. I would not be comfortable betting my life on a press release, but desperate situations sometimes justify desperate measures!
Certainly talk to your doctor to see if he is aware of any trials in your area. I also suggest contacting major cancer centers in your area directly. The US National Cancer Institute has designated a number of major cancer centers as "Comprehensive Cancer Centers" or "Clinical Cancer Centers". Almost all of these centers have web pages and many list clinical trials. Searching each one is very tedious work, but it could pay off. To get started, check out the NCI Cancer Centers search page on the NCI's Cancer.gov. The page is organized geographically but unless you have made a conscious decision to limit travel you will want to search centers in all regions.
This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: 1996, Last Updated: January 9, 2009