The explosion of information available to patients online, and regulations promoting greater transparency in clinical trials, have combined to put thousands of research trials, quite literally, at our fingertips. However, for a patient or caregiver struggling to understand their treatment options, this can appear to be more a daunting morass of data rather than a welcome resource.
While the clinical trial registration data housed in the US repository ClinicalTrials.gov is generally regularly structured, much of it is written in less-than-friendly language, and study sponsors vary considerably in the amount of detail provided in key areas – for example, study eligibility criteria, and the name and exact location of study sites.
This has naturally given rise to a number of “matchmaking” services. These services aim to assist patients in searching through - and making sense of - this vast collection of clinical trials to more quickly determine whether any of them might be a good fit.
Some of these services are tuned into a specific patient population (such as the Fox Trial Finder for Parkinson’s or the trial search on the National MS Foundation). However, many of them aspire to cover the full breadth of clinical trials.
Below is a listing of a number of these research matchmakers (know of more? Please post them in the comments and I’ll update the list). For fairness, I've simply listed them in alphabetical order – this list is presented as a launching point to learn more, not as a specific endorsement of any of these services. However, I personally feel they're all worth watching.
[Update 3/5: Based on a very helpful comment from Laurie Meehan (see below), I've added two entries to this list from her earlier post on this topic.]
[Update 3/12: Yet another helpful comment from Matt Winslow, so I've added ClinicalResearch.com to the list.]
While CenterWatch is deservedly most famous for matching study sponsors to research sites, it has actually been running a patient search function since 1994. It announced a revamp of this service in September 2013.
The venerable nonprofit Center for Information and Study on Clinical Research Participation (CISCRP), as part of its broad mission to support and promote research participation, also includes a trial locator via its SearchClinicalTrials.org website. Patients can search online or call CISCRP staffers for more individual support.
ClinicalResearch.com is a trial search and registration service from Quintiles. the global CRO. Although it was developed and run by Quintiles, it's search function is neutral: "the clinical study search feature pulls currently recruiting studies from global comprehensive registries -- not just Quintiles studies."
Clinical Connection appears to have started with a more traditional model of building an opt-in patient database (their website mentions “400,000+ members”), but now also features a full array
of patient outreach and search capabilities. They have also become a ubiquitous presence in Google search ads and Twitter.
One area where CureLauncher stands apart from its peers becomes obvious as soon as you land on its home page: there is no search box. Instead, CureLauncher wants to talk to you, the patient, and guide you through the process over the phone. In our high-tech DIY age, they’ve gone the high touch route with the idea that the information available can simply be too overwhelming for patients without some experienced support.
My Clinical Trial Locator
My Clinical Trial Locator is a trial search service created by the Bruce and Marsha Moskowitz Foundation. It currently features a basic search interface, but no additional bells or whistles. Unlike most other services, however, mCTL does provide search results for trial sites outside of the US.
According to its tagline, “StudyHippo is a quick and easy way to find local clinical research studies that help you earn a little extra spending money”. The service started as a project by students at the Harvard Business School. At the time of this writing, the Study Hippo website appears to be unavailable, and its Facebook page hasn't had an update since June, so it is difficult to tell where they are at operationally at this time.
As its website says, “Study Scavenger Is A Free Smartphone Application For Potential Research Subjects To Find Clinical Research Studies That Meet Their Personal Health Needs.” While you can still search for trials directly on their website, Study Scavenger appears to be focusing on the development of its phone app.
Study Scavenger also recently announced a partnership with CenterWatch, although no specific details of this partnership were provided.
According to their website, TrialReach says it is “working to facilitate the vital connections needed between patients and research teams because it is through this collaboration that progress can be achieved.” TrialReach appears to be a small organization still in startup mode, but it received some highly favorable coverage in Forbes last year.
TrialX not only builds platforms for hosting clinical trial information for various institutions and groups (for example, it runs a specialized trial search function for the Multiple Myeloma Research Foundation), but it also hosts its own clinical trial search tool, named Dory 2.0 (who happens to share a name, and certain features, with a well-known animated movie character). Rather than provide a standard search interface, Dory walks the user through a series of questions before providing results.
One thing all of these services have in common is cost: they are public and free to patients, with the service collecting money from sites and/or sponsors on the back end.
This is an interesting area to watch for 2014 and 2015. I expect we will see some additional entrants to the field, as well as possibly some exits as competition for patient attention heats up. One critical area of improvement will be in patient accessibility: many listings still carry over too much of the opacity of their original ClinicalTrials.gov entries, potentially limiting patient comprehension.