Which Clinical Trial Matching Service is Right for You? 6

Photo by DIAC Images

Photo by DIAC Images

Every day, scientists all over the world are working to discover new and promising treatment options for diseases like Alzheimer’s, Cancer, Diabetes, and Parkinson’s. But, unfortunately, many of those treatments never make it past the testing phase, due to difficulties in finding enough volunteers for clinical trials. According to a recent article in the Sacramento Bee, 85 percent of drug trials face delays because of difficulties attracting and retaining participants.  And, enrollment rates in drug studies have dropped 20 percent since 2000.

The reasons for the drop are unclear. But, for patients who are considering clinical trials as an option, the complexity of finding the right trial and then fully understanding the requirements, risks and benefits almost certainly isn’t helping.

Once a patient does find a clinical trial for which she seems to be a good match, she may find that it just doesn’t fit her needs or lifestyle. Many trial protocols are created solely by sponsors and researchers who may not have taken patient perspectives into consideration. This means that they may have designed a trial with many barriers to entry, such as poor fit to local standards of care, lack of flexibility for the patients in scheduling appointments associated with the trial, and inconvenient locations.

At Lilly COI, we’re working to address the communication and protocol design issues through initiatives like our Clinical Trial Revisualization Design Challenge. And, fortunately, a number of clinical trial matching services have emerged in recent years to help patients find the right trials much more easily.

Choosing a Clinical Trial Matching Service

You now have more options than ever when it comes to clinical trial matching services; however, finding one that’s best suited to your needs can be a time-intensive process.

Some services require you to register with their site, meaning that you may be asked to share contact information and information about your condition. Others simply offer a database that you can search for free without having to register. Some will communicate with you through email or their site’s internal messaging system. Others will communicate with you over the phone.

It’s a good idea to spend a little time beforehand thinking about your preferences. Do you prefer to communicate online or over the phone? Are you comfortable sharing some of your health information with others, or do you prefer to keep it completely private? Deciding which options you are most comfortable with will help to save you time when searching for the right matching service.

In addition, the American Cancer Society, suggests that you also ask yourself these questions when vetting clinical trial matching services:

  • Is there a fee for using the service?
  • Does the service keep my information confidential?
  • Where does the service get its list of clinical trials?
  • Does the service rank the studies in any particular order, and is the rank based on fees they receive?

A Few Examples

http://upload.wikimedia.org/wikipedia/commons/thumb/d/dd/BloodPressure2.jpg/220px-BloodPressure2.jpg

We’ve selected a few examples from the many matching services that are currently available. Our selections are not intended to act as an endorsement of these sites over others—our hope is that this list will merely serve as a starting point as you explore the possibilities to find the right fit for you.

For simplification’s sake, we’ve split clinical trial matching services into three categories:  Services that primarily rely on registries to auto-match you, services that don’t require registration and disease-specific services.

Registration-Based Services

Registration-based services take some of the guesswork out of searching for clinical trials. They allow you to register, share some information about your condition, and discuss your experiences with other patients. They also use the information you provide in your profile to automatically send you an alert when there’s a clinical trial in their database you may qualify for.  If you’re interested in this type of service, here are a few options for you:

Registries for All (Reg4All), produced by Genetic Alliance, allows you to share information about yourself and your disease by filling out a profile and participating in surveys. Based on the information you share, it can match you with not only clinical trials, but also support organizations and resources that might be helpful in managing your condition. It also lets you control how much of your personal information is shared and with whom. Users of the site can set restrictions on the types of information they are willing to share.

ResearchMatch partners with clinical research sites and patient advocacy groups to provide a secure place for volunteers and researchers to get connected. Once you sign up and get added to the registry, a researcher will contact you if they think you’re a good match for their research study.

PatientsLikeMe is a clinical research platform that can provide real-world, real-time insight into thousands of diseases and conditions. Create an account, provide basic demographic information and Patients Like Me will keep you up-to-date on clinical trials you may qualify for. Once you’ve registered with the site, you can also connect with other patients who are working to manage the same condition, and track your treatment history.

No Registration Required

Some services offer you an easily searchable online database, where you can search independently and contact researchers who are conducting trials you’re interested in. Others allow you to contact them by phone, where a live person will talk with you about your condition and tell you about clinical trials you may qualify for.  The following are examples of these types of services:

CureLauncher’s goal is to match patients to the clinical trials that are right for them.  You can call their toll free number and speak to a Relationship Manager who will help you locate trials and send you a concise, easy-to ready report on the trials that match your condition and needs. If you wish, they will also contact the trial site of your choice so you can meet their team and learn more.

CenterWatch offers several services and resources specifically to patients. Their Clinical Trial Listing Service provides patients with unbiased information on thousands of currently enrolling clinical trials. You can search their database by medical condition, geographic location or research center to find the trial that best matches your needs.  Once you’re ready to learn more about a trial, you can contact the researchers directly through the contact information listed along with each trial. You can also sign up for their free e-mail newsletter, which will send you a message whenever new trials are added in your area of interest.

My Clinical Trial Locator was created to help patients and physicians find one another in an increasingly complex health care landscape where clinical trials proliferate but may be difficult to navigate. The site allows patients to search for clinical trials and observational studies by disease, condition or location and provides the research site’s contact information. Patients can view their clinical trial search results on a map and, if they wish,  sign up for “push notifications” to find out about new clinical trials.

Disease-Specific Services

Some clinical trial matching services specialize in certain diseases and conditions. There are often hosted by patient advocacy organizations, and may have the added benefit of allowing you to be a part of a community of people who are all similarly focused and motivated.  We’ve listed only three diseases here, but there are many other services for many different types of conditions. If you’re interested in this type of matching service for a condition that isn’t listed here, contact a patient advocacy organization that’s focused on your disease.

Smart Patients is an online community where cancer patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience.  You can use their built-in clinical trial search engine to find relevant trials. Then, if you’d like to get help and advice from patients who have your same cancer and similar complications or treatments, request an email invitation.

The  Alzheimer’s Association’s TrialMatch® is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies. Their continuously updated database of 130+ Alzheimer’s clinical trials include both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted at nearly 500 trial sites across the country. You can contact TrialMatch representative through the website or by phone.

The Fox Trial Finder has helped to recruit more than 21,000 volunteers for Parkinson’s Disease trials. On their website potential volunteers register and create a profile with their location, gender, date of birth and brief medical history. The system then generates a listing of possible trial matches from the Fox Trial Finder database of recruiting Parkinson’s disease (PD) trials. And, if you have questions, you can easily connect with one of their trial team members to learn more.

What Do You Think?

In spite of these efforts, 30 percent of all clinical trials fail to recruit a single person. Clearly, we’ll still missing the mark when it comes to reaching the patients who could benefit from medical research.  We’d like to know what works and what doesn’t from your perspective. Take this quick poll to let us know who you trust the most to host a clinical trial matching service:

Then, leave a comment here with your ideas for making clinical trial services even more user-friendly. Your input is invaluable in helping to usher in the kind of change clinical research so desperately needs, and may influence future projects at Lilly COI. We look forward to hearing from you!

6 comments

  1. Drug companies should really do some sort of outreach effort to get this medicine therapy into people’s handsand not just let academic scientists handle it.

    • I think it can be a tough environment to maneuver. Direct outreach of the medicine or specific treatment to patients may be walking the line of promoting unapproved drug products. Target the medical need and expose the opportunity to participate in clinical trials IF it makes sense for that person/ family / caregiver/ medical provider and their situation. At the end of the day it’s another treatment option and I agree that pharma should interact with patients and the public to inform and connect clinical research.

  2. I’m liking the clinical trial matching services supported by patient advocacy groups. I’m all for more transparency in clinical research and when a patient has a positive interaction in a trial and promotes the benefits of participation, that is inspiring. This can motivate others to volunteer and learn about new clinical trials thereby truly accelerating drug development.

  3. Pingback: Bringng Clinical Trials To the ePatient « lillycoi

  4. Pingback: Questions to Ask Your Doctor About Clinical Trials « lillycoi

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