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Caregiving Chronicles

News and analysis on caregiving topics in MetroWest and beyond.

Caregiving Chronicles

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Caregiving Chronicles will present news and analysis on caregiving topics in MetroWest and around the world, in-depth Q&As with experts in fields related to caregiving and updates and announcements about caregiving resources available in MetroWest from CaregivingMetroWest.org Program Director Douglas Flynn.


Caregiving Chronicles Q&A: Learning about clinical trials and a new resource to guide you through the process
By Douglas Flynn / October 25, 2017


Editor’s note:
 In the Caregiving Chronicles blog's quest to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org, we offer some 
valuable insight through our ongoing series of Q&A sessions with experts in various fields related to caregiving.  

In this entry, we discuss the benefits and concerns of having your loved one participate in a clinical trial and a new resource, Clara Health, that can help caregivers and their loved ones find clinical trials for the conditions they are dealing with and help guide them through the process. Providing insight is Lilly Stairs, who is the Head of Patient Advocacy at Clara. 

Caregiving MetroWest: Can you explain exactly what Clara Health is and how it came about?
Lilly Stairs: Clara Health is a platform working to connect patients and caregivers to clinical trials and holding their hand throughout the process.

As for how Clara came about, well, it all started with a flyer. As a student at Brown University, Clara’s co-founder Sol Chen, frequently saw flyers on campus advertising a local band playing that night, an apartment for rent, or a coffee shop comedy show. But on her way to class one morning, there was one that was striking among the rest – it was recruiting for a breast cancer clinical trial. She recognized that the trial held hope for a better future for a breast cancer patient, but to find it stapled to a telephone pole? She knew many patients who might benefit from the trial would never see it, and anyone who did was likely to ignore it. She thought, “How can a patient feel empowered to make treatment decision when that information is coming from a flyer?” It was incomprehensible and unacceptable and that’s how Clara began ... with Sol’s mission to do right by patients and to create something that would empower patients with the knowledge that clinical trials are an option.

CGMW: Why is it so important to increase awareness of and participation in clinical trials?
Stairs: Clinical trials are the lifeblood of innovation. They are essential to bringing new treatments to the patients who need them most but unfortunately over 80% of trials run are delayed due to difficulty finding participants.

While trials can offer patients breakthrough treatments, most physicians don’t even have time to keep up to date with all the trials being run at their own hospital, let alone everywhere else. This leaves patients to look for themselves if they want to participate, but they often don’t because they are difficult to find and even harder to enroll in.

Awareness is key to ensuring that patients and caregivers are empowered with the knowledge that clinical trials are an option that can offer access to cutting edge therapies. 

CGMW: To any readers who may not be too familiar with clinical trials, could you describe a little about how they work? What should patients and their caregivers know about clinical trials and what should they expect if they decide to participate in one?
Stairs:
Clinical trials are research studies that investigate how effective a medical treatment or device is for treating a condition. Clinical trials show us what works in medicine and healthcare. These studies are required in the pathway to develop any new treatments for diseases. Every medication currently available was once available only in a clinical trial.

While each trial is different, patients and caregivers should expect to be monitored closely and to receive attentive care. To fully understand what it means to participate in a clinical trial and be prepared for what to expect, I recommend checking out Clara Guides where we cover everything from insurance to travel reimbursement and what to bring to your first appointment.

CGMW: What does Clara Health do to help patients and their caregivers find the right clinical trial for their condition and situation?
Stairs:
Clara is committed to holding the patient and caregiver’s hand throughout the entire process. We start by educating patients on clinical trials with Clara Guides, and then we help you find the best trial when you sign up on our platform. All this is free to patients, and it always will be!

Through our quick and easy onboarding process that helps us get to know you better, we can sort through trials that you qualify for. We’ll even go ahead and call the clinical trial sites to help set up pre-screening and coordinate initial paperwork. Our goal is to support every patient, each step of the way, and we are dedicated to removing the frustration and hassle that can come along with trying to embark on the journey alone.

CGMW: How is Clara Health funded and sustained? Does that have any effect on the trials you connect patients to?
Stairs:
Currently, Clara Health is funded by venture capital firms. As the company becomes revenue generating, we will partner with biotech and pharma companies who sponsor clinical trials. It’s important to us that the way we generate revenue will never impact the trials we connect patients to. We will always list every trial that is available to patients and will never push patients into a trial that is not the right fit.

CGMW: You’re based in Cambridge. Are you focused on connecting people to clinical trials in this area or do you offer information on trials beyond Massachusetts?
Stairs:
While we are based in Massachusetts, we are committed to supporting patients across the country and around the world who are interested in enrolling in a clinical trial!

CGMW: Do you specialize in trials for any particular diseases or conditions? Most of the users of our site are caring for older adults, many of whom have Alzheimer’s or another form of dementia. Are there many clinical trials dealing with those conditions?
Stairs:
Yes! In fact there are currently 322 clinical trials recruiting for Alzheimer’s and about 180,000 volunteers needed to fill these trials.

CGMW: And what should patients and caregivers know about them?
Stairs:
These trials can be a great option for patients to consider who would like to access a potentially cutting edge therapy or for patients who have exhausted other treatment options. We recommend searching on Clara’s platform to see if you or a loved one qualifies for a trial near you. The Clara team would be more than happy to help you search as well. You can feel free to call or email us at 1-888-973-7445 or team@clarahealth.com and we will help walk you through options.

CGMW: Is there anything else our readers should know about Clara Health?
Stairs:
Patients come first. Always. Our entire team is dedicated to ensuring that patients and caregivers are provided with all of the support they need and we are working alongside patient advocates to craft the best experience possible. Our patient advisers and ambassadors help us raise awareness about the power of breakthrough research and are working closely with us to guide the development of our platform.

Reach out to us anytime! We would be honored to support you or your loved one through your healthcare journey.



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