Sunday, March 2, 2014
Searching for Melanoma Trials???! The down low on search engines ~ links included!!!
Like the inner Cairn Terrier I am, when looking for trial options for some of my melanoma peeps, I got very excited when Brent stumbled upon MDLinx, a pretty user friendly, clinical trial search engine, PLUS found some remaining spots for Nivolumab (BMS' anti-PD1 product)!!!! And that got me thinking..... Searching for a clinical trial for yourself or your loved one is pure hell. I have to say...Brent did all that for me. He now admits that he spent "tedious, stressful, months searching". And he's trained to look at this mess!! We decided to take it on and really look at the search options out there. Here's what we found......
General info: Every clinical trial finder (search engine) we explored uses Clinicaltrials.gov as their data base. They vary based on the filter they use and whether you can access a live person to help you with the process.
Definitely accessible by anyone with a computer, and that's the beauty and the problem. You can find anything, but you also find everything. Legitimate trials, studies, and data are out there. But, so are folks talking about amazing cures after they stood in the sand, looking east, while eating a plum, just after a coffee enema!!! Then, there are the horror stories of a person doing this thing, then enduring severe pain and the growth of three heads. So, Dr. Google has to be taken with a grain of salt. Just like all the bloggers you can find there! ;>) Some give referenced data and wonderful personal experiences that a qualitative researcher would be lucky to access and others are just off the wall. You'll have to use your personal judgement to determine what makes sense to you. We found Google most helpful as a jumping off point to the information you do want to find. Perhaps, one of its best uses, is to research people and places. By that I mean, when you see a trial or read a study that you are interested in...check out the author, the institution that participated, the folks listed in the references. Then....by all means...Google them!!! That can lead you to some actually useful information!
Certainly the mac daddy of research trial sites. All clinical trials conducted in the United States (and actually much of the world) must be registered through NIH. That's where they get those nifty NCT numbers. The problem with this site is that it is large, cumbersome, and not terribly current. They may not have the most up-to-date information about specific studies - including locations or whether the trial is currently enrolling or not. You can enter melanoma in a general search. You can do an advanced search with a few more particulars. For instance, when I put in "melanoma" today, I got 1,493 studies. When I clicked the box, "open studies only" 486 came up. The main problem is, for the most part, you have to click on each individual study and read all it's exclusion and requirement data to see if it fits for you. There is no good filter to get it to narrow it down very much further for your particular profile. One other point: You can't be hatin' on search engines for the strange trials of questionable merit/value they turn up. ALL TRIALS...every last one of them...meet NIH standards and go through ClinicalTrials.gov FIRST!!!! For instance: NCT01072344, Long Term Chamomile Therapy for Anxiety....is still recruiting at University of Pennsylvania....if you want to go for it!!!!
Mdlinx, is a network of 33 web sites that provides a variety of services mostly for physicians...from job listings, to research by topics, ads, etc...but it also has a trial search option. Not clear whether physicians are paid capitation fees for referral or not. Anyhow....Once you click on the link above, you have a form in which you can select: the state you want to look at (or look at "all"), the mile radius, phase of trial, and trial ratings....looking at as narrow or as broad a selection as you like. With very little info beyond melanoma I was given a display of 196 actively recruiting trials, with a description, the quota filled, location, and a rating. Had I filled in more info, it would also give me the distance. When I clicked on a trial offered....Phase 1 biomarker of anti-PD1in Advanced Melanoma....it told me it is a phase 1 trial, to have 160 participants with only 2/5's enrolled, BMS is the sponsor, a trial conclusion date of 2017, inclusions and exclusions, and a complete list of locations. It has a good filter. There is no personal profile search (meaning no particular search based on your melanoma history and prior treatment). It does take "key" words. You could for instance, enter: 'melanoma brain'....or: 'melanoma anti-PD1'. There is no access to a live navigator.
Collabrx is a data analytics company that uses cloud based technology to analyze data, studies, and trials for patients, docs, companies, etc. There is a large medical board with some big dogs on it. Fisher and Flaherty are noted as the melanoma reps. The site states "advisor involvement is without financial compensation." It is unclear if docs get a referral fee when they use this service or not. But...what the heck! YOU can use it....free. When you click on the link above you are taken to a page with a melanoma specific filter that allows you to fill in your stage, primary, BRAF or other mutation status, and answer a few other questions about your condition. When I put in mine, I got 73 trials with a nice overview of information that might be pertinent to me. Now...it doesn't mean I qualify for all those studies. You still have check each for exclusions and such that the filter doesn't cover. It seems fairly up-to-date. Its simultaneous pros and cons are its filter. It narrows down studies well, but doesn't allow you look "beyond". For instance, ADC trials did not show up and if you don't know your BRAF status it doesn't give you a list of ANY trials. There is no live person available to assist.
EmergingMed is a commercial organization that provides services for nonprofit entities, including a clinical trial finder. It is used by MRF, Oncolinks (the engine on MIF), and many others. They do not make their money by capitation fees. They can provide a search based on your profile (your clinical history) or a general search. There are some limits in terms of the profile. There is no 'key word' search. There is access to a live navigator. The results lead you to the ClinicalTrials.gov database.
National Cancer Institute - clinical trial search
This is a subdivision of the National Institute of Health. It links to the ClinicalTrials.gov database. It has a reasonable search engine and you can enter "key" words. It does not use a clinical profile. There is live help available for contact if desired.
Coalition of Cancer Cooperative Groups
This collective is a group of oncology services who formed a foundation to promote clinical trials. They use the ClinicalTrials.gov database as well as information from within their participating groups. For studies being done by the groups in the cooperative, they have rapid access to changes in those clinical trials. (Meaning, since they are in the know about their own studies....when they close, how many slots are left, changes in the protocol...they update those studies in real time!!) Their site won an award in 2008 as 'Best in Show' and 'Best Application for Enhancing Patient Access for Information' from the National Consumer Healthcare Group. They use your clinical profile as a filter. They are linked to the American Cancer Society for navigation resources.
American Association for Cancer Research...clinical trial finder
This is an organization that supports cancer research, through various programs, including 'Stand Up to Cancer'. It uses EmergingMed to power its clinical trial search, but has its own clinical trial navigator (a real human) to help you if you like.
Melanoma Hope Network....Trial finder
This is a nonprofit organization dedicated to melanoma patients. It has a listing of centers of excellence and specialists in melanoma care. (A great place to get names and institutions to GOOGLE!!!) A good deal of education and resources are provided on the site. It offers TWO clinical trial search engines. One is Collabrx (reviewed above). The second option is a profile specific search. No navigator is available for either.
Finding a clinical trial is a complex and often frustrating process. Basically, all of the search engines are mining the same data. The differences relate to how up-to-date their information is kept, how well their search engine works, and whether or not you have access to a human to assist you in the process should you wish it. In the end, you still need a trained medical professional familiar with your circumstances to sort through the trials (once found) to see if they are even possibilities for you. Some drug companies offer trial listings as they relate to their drugs. If you know the drug and who makes it, this can be helpful. (This is where that Google search may come in handy...cause if you don't know either of those things, there is no way to utilize Pharma's listings.) Novartis is a bit of an exception. They actually have an android app.... Clinical Trial Seek - Novartis ... which does a reasonable job accessing the ClinicalTrials.gov database and therefore gives you ALL available clinical trial options, rather than only those related to their products as most other drug company sites do.
In the end, I would suggest using every resource you can!!!! That is certainly what I do to help others and definitely what I would do for myself should I have the need.
I owe a great debt of appreciation to Bentie, who helped me with days of research for this post. We learned a lot and hope it will be helpful to those of you in need. Poor, Bent. Stuck with a Cairn Terrier when he thought he was getting an Afghan Hound! Good luck to you all! - c