By Lizzy Smith | Posted - Mar 29th, 2016

 

 

 

 

Patient Power: Creating SparkCures-- A Site That Makes Finding a Myeloma Clinical Trial Easy-Peasy

Medical correspondent for Patient Power, Carol Preston, interviews the creator of SparkCures, Brian McMahon. Getting into a clinical trial is not as easy as one might think (or hope). In fact, it can mean sifting through sometimes thousands of clinical trial, trying to decipher what the summaries mean, and if the information is even up-to-date. After that, trying to find a working phone number or email address can send a patient, doctor or caregiver down a very confusing rabbit hole. The answer? SparkCures (www.sparkcures.com), which is a surprisingly easy tool for finding myeloma-specific and accurate clinical trials.

Connecting Myeloma Patients With Clinical Trials Through SparkCures from Patient Power on Vimeo. You can also view the entire transcript by clicking here. You can read excerpts of the interview below about the how, why and what of SparkCures. Finding a clinical trial has never been simpler.

Brian McMahon (founder of SparkCures):

So my mother was diagnosed with multiple myeloma back in 2005. And at the time, she was a really high-risk myeloma patient, so two genetic mutations, a deletion in a translocation so a really poor prognosis associated with that.  Now, you have to remember, Carol, my mom was an outlier for patients, because she was an oncology nurse with 30-some years of experience, and she was a pharmaceutical clinical sports specialist as well as a salesperson for Amgen, so she really had the clinical side and the pharmaceutical side.

So when she was diagnosed, she knew exactly who to call to find a clinical trial. And within two weeks of diagnosis, we were down at the University of Arkansas and enrolled in a clinical trial.  Now, you know, unfortunately, the end outcome was my mother passed away after less than two years with disease, but it was two years that we got with my mom that otherwise we don't think we would have had without her going on that clinical trial.

So the other diagnosis, my father-in-law was diagnosed with pancreatic cancer. And the difference here was when we went to that doctor meeting, you know, at this point that was the fourth cancer patient we had cared for internally with the family, so we knew the right questions to ask, and clinical trials weren't even brought up in that initial diagnosis meeting.

And so when we asked the doctor about that he said, well, he doesn't match any trials here at the hospital, but if you want to go on clinicaltrials.gov and do some searches, we'll be happy to help figure out if you might be a fit or help at the next meeting.  So we went home.  We went to clinicaltrials.gov, we put in pancreatic cancer, and we actually took the time to—you know, you can put in your ZIP code, you can put in your location and then how far away you want to search—we still had over 350 clinical trial matches after that fact.

So the question is do you then print out over a thousand pages of clinical trials of clinicaltrials.gov documentation for a 15- to 20-minute consultation with your doctor?  It's just a really difficult process for most patients, most caregivers, most families to go through.

So we started SparkCures. After my business partner passed away, within two months my father-in-law was diagnosed, and, unfortunately, we shut down my business that my partner, who had cancer, after he passed away. So I took a little bit of time off to figure out what my next step was going to be. And really my plan all along was once I retired I wanted to do something on the cancer side.  I wanted to give back.

It had always been a big part. My mom was on the ONS, she was part of the LLS, she was really active, so we were really active as kids.  And what I really got to was what am I going to wait for? My father-in-law was 48, my mother was 62, my business partner was 54, you know, there might not be a later.  So I thought why don't we do something now to really help patients.  And what we got to after meeting with doctors, with nurses, with patients, with pharmaceutical companies, we realized that there really was a need to help connect cancer patients and help them understand their clinical trial options.

Really, at the end of the day, a clinical trial has a list of reasons you can join it and a list of reasons why you would not be allowed to join or participate in that clinical trial.  What we've done is we've actually gone in and coded that into our software product so that a patient can go and answer very patient-friendly questions.

So for myeloma patients one of the big inclusion/exclusion criteria is what is your myeloma status? Are you relapsed? Are you refractory? Are you relapsed and refractory? Most patients have a difficult time answering these questions.  So we've spent a lot of time working with patients to ask that in a way that helps them, you know, where they don't need to know what that status is, but we can get to the end outcome of knowing what their status is. They answer some questions. They enter in certain lab values, their M proteins, their free light change, their creatinine and creatinine clearances. And what we've been able to do—the amazing thing is on average if you go to clinicaltrials.gov you're going to get about 207 clinical trials for myeloma patients.  We've been able to deliver that down to 10 or less on every match that we do for patients. sparkcures-logo

 
Lizzy Smith
About the Author

Lizzy Smith - Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.

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