Researching Therapies and Participation in Trials

A couple of times a month I receive e-mail from people asking for information and advice about medical advances relating to their specific conditions. The purpose of this entry is to provide a modestly encompassing answer for these sorts of inquiries.

Firstly, I am not a physician. I am merely an observer and advocate for medical research aimed greatly extending healthy longevity. That I report on advances - and potential advances, some of which never materialize - in treating specific age-related conditions is par for the course. It doesn't give me any particular expertise beyond a fair general knowledge regarding the current state of research in a few broad fields. I am certainly not infallible, and most certainly not a replacement for your own research, due diligence, decision-making process and responsibility for your own health. You should read the disclaimer here before proceeding.

So, that said, how does one find out more about the current state of play regarding therapies for a specific condition? The first place to start is with your physician or specialist: it is your responsibility to use these folks as a resource for obtaining information about current therapies, what is in the pipeline and access to trials. If you don't ask, you don't find out - so ask!

Specialists in a given field tend to be more aware of the latest work and possibility of placement in clinical trials for new technologies, but they also tend to be behind the curve - as would you if you had a specialist's workload. You have far more time than your specialist to devote to learning about the latest research related to your condition. Knowing how to effectively search the internet and filter out bad information is an essential skill if you want to fully participate in ensuring your own health.

A good starting point - especially for more common conditions - is Google News. Enter the common name of your condition along with terms such as "research," "science" or "stem cell" and see what crops up. In general, the sources used by Google News lean towards the more reputable for this sort of information - press release reprint sites like ScienceDaily and major news organizations like Reuters. This doesn't make these sources infallible (and Google News will only dig up articles from the past couple of months) but it does tend to exclude the more unreliable regions of the internet.

The popular science news sites - like ScienceDaily and EurekAlert - also provide a good, searchable resource that stretches back for years worth of articles.

Still, always check the source of a given article! Is it from the newsdesk of a reliable organization, a well-known company, or a press release from a reputable research group or university?

UPDATE 08/22/2005: You might want to read a PLoS Medicine article on how to use search engines to find efficiently find medical information online. It's aimed at beginners, but has plenty of useful pointers and references for more experienced folks. I think you'll find it helpful.

For the purposes of this discussion, I am assuming that if you can read, evaluate (within the broader context of scientific debate in a given field) and extract value from scientific papers, then you already have access to and know how to use sites like PubMed. The majority of us should leave that for the professionals - medical research is still a field in which arguments can take decades to resolve one way or another, generating papers along the way that express every possible point of view. A single scientific paper is not as useful as a single media article - unless that media article is simply parroting the contents of a single paper, but that isn't too common.

UPDATE: Michael Rae opines:

I actually think it's extremely common. A single article comes out in the press, and the story summarizes it in popular form, often with interviews coming only from the investigators -- and in much less cautious terms, and with less review of previous research. When one gets an article with a broader focus, it's often so vague (space constraints, attention span of readership) as to give few to no useful details that a person already asking these questions wouldn't already know. A PubMed search is exactly likely to give one a range of views on a subject, because you *don't* get a single article, but a range of editorial, review, clinical, and preclinical material on the subject (unless one constructs one's search very narrowly -- in which case, one is probably already one o' them professionals ;) ).

What to look for in articles about medical research into your condition? Well, you might consider keeping notes on the following items:

  • Which researchers are working on this condition?
  • Which research institutions are working on this condition?
  • Have clinical trials in humans taken place? Are they working with animals only, or are they still at the stage of tests in petri dishes?
  • How successful are results to date?

News articles from responsible organizations almost always list the scientists and research institutions involved.

At this point, I'll assume that if you are interested in researching progress with respect to a given condition, you are probably also interested in find out how to gain access to clinical trials. Human trials take place at all stages through the research and commercialization of a new therapy, and the therapies vary from extremely speculative through to fairly sure things - depending on how far along and how large the trials are. It is important to recognize that all trials can expose the participants to serious risks and that simply having the relevant condition is no guarantee of participation. This is another of those risk-reward calculations that you and your physician or specialist should make in the full knowledge of your own medical history.

But onwards: how does one get into a human trial for a new therapy? The first step is to find out whether trials are taking place, and if so who to talk to about participation. As always, start by talking to your specialist; a well-connected physician is a good thing, but only if they know that you are interested in trial participation.

Beyond that, the best way forward is to pick up the phone and start calling. Take that list of names and institutions you obtained from online research and start working your way through them. Finding contact information for scientists is usually easy - it will be listed on the research institution website, or you can call the department secretary (or equivalent) to obtain it. The research community associated with any given combination of therapy and condition is usually small enough that any given researcher knows who is doing what - and who you should call next. If you are polite and persistent, you should be able to find out everything you need to know about current and forthcoming human trials and who to talk to about participation.

UPDATE: Michael Rae offers the following suggestion:

You might mention http://www.clinicaltrials.gov/, which lets you search initiating, ongoing, and just-concluded-but-unpublished clinical trials registered with the NIH -- a very useful resource if someone actually wants to get involved with same.

UPDATE 09/22/2005: The International Federation of Pharmaceutical Manufacturers and Associations has recently launched a clinical trials site. You should find this helpful as well.

If you find a clinical trial you are qualified for and would like to participate in, involve your physician or specialist in this process. He or she knows your medical history and can help quantify the risks involved. Make your decisions with your eyes open and in possession of all the facts.

Comments

Yes..one can find information that's too premature to really be useful. There are times, however, where you can find concepts with significant research history behind them but they are not embraced clinically due to various non-medical reasons. Metronomic therapy and Chronotherapy can provide increased efficacy, decreased toxicity and reversal of treatment resistance in cancer treatment. But they would prove a bit disruptive to prevailing site based chemo delivery/reimbursement arrangements. It would be very difficult to an infusion center to infusions dictated by the best time for the patient. The current "barber shop" approach is more efficient, if not necessarily effective. And oral metronomics would put a lot of infusion staff on the street and reduce revenue to doctors for infusions. Hrushevsky's been toiling on this issue for 20+ years. He must have callouses on his forehead that match the indentations on the wall. My forehead's still in the raw stage.

Posted by: Rich Reilly at December 8th, 2009 7:25 PM

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