Robyn Ryan: Clinical Research and the Journey to Find Answers

Robyn Ryan’s medical journey officially began in 1994 when she was running to catch a school bus and was hit by an oncoming car. Robyn cartwheeled through the air and landed, unconscious, on the asphalt.

The 12-year-old spent the next two months recovering from a torn ligament in her leg. In time, Robyn’s leg healed, and she returned to school, but things still didn’t seem quite right. She was dizzy and light-headed and suffered from frequent headaches. She also seemed strangely unaware of her surroundings, which led to dangerous behaviors.

“I’d cross streets against the light or ride my bike into traffic,” she says. “Everybody thought I was reckless and a daredevil. I didn’t think much of it.”

Robyn’s risk taking led to a string of accidents – falls down icy stairs, bicycle collisions, motorcycle accidents – and a litany of ankle, leg, back and head injuries. Each time, doctors patched her up and sent her on her way.

With no one to connect the dots for her, Robyn persevered. She struggled through high school and went on to art school in Philadelphia, where she lives, and participated in her first clinical trial — a sleep study — just to earn a few dollars.

Despite her best efforts, Robyn couldn’t seem to “get it together.”  After art school she had trouble holding down a job. She had trouble listening to instructions and following rules. She’d get tired and fall asleep on the job. Sometimes she wouldn’t show up at all.

Over the years Robyn moved from one temporary position to another, none of them lasting more than six or eight months. In 2007 she began suffering from debilitating headaches. Her doctor suggested she participate in a clinical trial to see if she could learn anything. Robyn signed up for a trial that required her to wear electrodes taped to her scalp for a few days. Although the study was painless, it didn’t alleviate her headaches or provide any answers.

Out of work and facing a mountain of student loans, Robyn took a shot in the dark.

“I called Health Partners, which is where my doctor was and asked ‘Do you have access to any kind of jobs?’ I explained about my accidents. I didn’t know anything about brain injury at the time, but whoever answered the phone listened and wanted to help.”

Someone at Health Partners connected her with the Pennsylvania Department of Labor & Industry’s Office of Vocational Rehabilitation, which in turn directed her to Moss Rehab at Einstein Healthcare Network.

Finally, Robyn’s luck started to change. Doctors at Moss asked her a lot of questions. They conducted a battery of neurological tests and brain scans, reviewed medical records from all of her accidents, and even asked her about two early childhood falls down staircases that were never documented in her medical record. They discovered Robyn had suffered traumatic brain injuries (TBI) on six different occasions.

The diagnosis enabled Robyn and her care team, which includes a case manager, neurophysiologist and therapist, to address her physical, emotional and social needs in a comprehensive fashion. Her case manager helped her apply for student loan forgiveness and register for a waiver program to pay for her services. Clinicians prescribed medications to alleviate her depression and help manage her anger. In addition, speech, occupational and physical therapists helped her develop skills associated with areas of her brain that hadn’t been damaged. The therapy helped strengthen Robyn’s communication skills and learn to cook.

Robyn, now 35, has had to give up some potentially dangerous activities – such as driving and riding her bike because of her inclination to take risks.

“In a lot of ways I’m still dealing with the same types of problems as before, but at least now I feel like I’m moving forward,” says Robyn, who will soon start work in a call center that employs people with disabilities.

What’s more, she knows there is cause for hope. “TBI has been one of the most difficult things for researchers to understand, but there is a lot of funding now that goes toward brain injury that wasn’t there before,” says Robyn, who hopes to participate in future trials that can shed more light on TBI.

She knows from experience that participating in clinical research doesn’t have to be a long and involved ordeal.

“I think it’s a misconception that a lot of people have that clinical research requires a lot of a participant,” she says. “Sometimes it’s as simple as being interviewed or answering a few questions.”

And no one knows better than Robyn that asking the right questions leads to important answers.

 

By: Shelly Reese

Letter from the Editor, November 2017

Dear Readers,

As 2017 begins to wind down, I’m excited to share some updates and information about what the remainder of the year has in store for CISCRP and what we’re looking forward to in early 2018. 

In this edition of our newsletter we are honored to be spotlighting Robyn Ryan in our Medical Hero Spotlight.  Robyn, who suffers from Traumatic Brain Injury (TBI), shares her experience with clinical trials and why she hopes that there will be more clinical trial opportunities for her in the future.

We’re also giving readers a look at how our Patient Advisory Board Panels are organized and conducted.  This is a service that we offer to organizations who wish to solicit feedback and gather valuable insights directly from patients and their support network on a variety of critical clinical study-related areas. Patient Advisory Board Panels are an invaluable approach to engaging study volunteers, enhancing their participation experience, and providing insights for ways to improve study feasibility, recruitment, and retention.

Our events schedule has been a full and exciting one this Fall!  We recently wrapped up AWARE for All Clinical Research Education events in Newark, Chicago, Wilmington and will be bringing the flagship event to  Jacksonville, FL on December 5th. We also co-hosted a Medical Heroes Appreciation 5K Walk/Run with Stormont Vail Health in Topeka, KS on October 21st.  Be sure to check out our upcoming events for 2018.

At the Newark AWARE for All event, we opened the first ever “MT Pharmacy,” a creative concept to help educate the public about the importance of clinical trials.  You can read all about the purpose of the pharmacy, how it was set up, and some of the feedback we got from the local Newark community. You can also view a video of the MT Pharmacy by visiting www.everyonesinvited.org or view the video here on our Youtube page.

In other news, we were honored to be recognized at Sanofi US’ Sanofi in Our Communities, Celebrating Diversity; a reception held on October 24th at their offices in Bridgewater, NJ.  Sanofi was the host sponsor for AWARE for All Newark and spoke about the success of both the AWARE event and the MT Pharmacy. 

And if you haven’t had a chance to take a look yet, CISCRP just released our 2017 Global Perceptions & Insights Study results.  The objective of the study is to establish routine global assessments of public and patient perceptions, motivations, and experiences with clinical research participation and represents the responses and opinions of 12,000+ members of the public and patients around the world.

Lastly, I invite everyone to check out our new Search Clinical Trials page that has been revamped.  This free concierge service helps people find a clinical trial through online search or by phone with a live customer service representative. 

Wishing the entire CISCRP Community a joyful and prosperous Holiday Season.  Thank you for your continued support as we work to build greater awareness and education around clinical research.

Thanks for reading,

Rachel Minnick

CISCRP Kicks off End of Year Fundraising Campaign to Support Patient Education and Outreach Programs

As a nonprofit organization, CISCRP relies on the support of generous donors to continue our efforts to increase and promote education and awareness about clinical research and clinical trial participation. Nearly 100% of all donations made to CISCRP go towards supporting specific educational and outreach assistance initiatives that are geared directly to patients and their families.

Each fall, CISCRP organizes an End of Year fundraising campaign to collect donations and support for the upcoming year. Every dollar raised during this time is put towards the development of both printed and live educational materials that help inform patients and the public about clinical research. Many individuals and companies choose to include CISCRP in their end of year donation giving to help support this important effort.

With the donations we raise each year, CISCRP reaches over 429,000 households with the AWARE For All Educational Outreach programs, distributes over 1 million copies of Educational Materials through investigative sites, sponsors, and CROs, generates over 120 million impressions with our Medical Heroes Campaign, and conducts over 5,000 unique searches to help patients and members of the public find relevant clinical trials through our free Search Clinical Trials Service.

CISCRP welcomes donations from individuals, companies, and groups. Some people choose to make a personal donation as part of their holiday or end of year giving.  Others make a donation on behalf of their clients or patients.  And some organizations make donations as part of their corporate gift giving or to support matching donations on behalf of their employees.  All donations are tax-deductible and can be submitted online or sent in via mail to the CISCRP office. Donors can choose to make their pledge on behalf of a company or dedicate their donation to honor a specific individual. CISCRP makes a point to recognize and thank our donors and supporters on our Circle of Supporters page.

For certain donation amounts, CISCRP can assist organizations with designing and sending out a customized email to colleagues, clients, or patients to share that a donation was made to CISCRP on their behalf to support clinical research education and awareness.

CISCRP’s End of Year fundraising campaign is very important to help sustain our programs and initiatives.  But there are also other opportunities and ways to support our organization. Individuals and companies can support us by purchasing educational items from CISCRP’s online store. Supporters can also fund the development of new materials to add to the store and education center by reaching out to Rachel Minnick, Senior Manager of Marketing and Patient Engagement Alliances at CISCRP. Individuals can also contribute to CISCRP by shopping online at AmazonSmile. And for those who are interested in making donations to specific programs and events, more information can be found by accessing CISCRP’s sponsorship packet.

To stay up to date about our End of Year campaign as well as other ways that you can support CISCRP, be sure to follow us on Facebook, Twitter, Instagram, and LinkedIn.

By: Leslie Perez

 

CISCRP’s Community Engagement Opportunities

Patients, volunteers, caregivers, advocates, health professionals, policy makers, and family members all make up CISCRP’s diverse community of engaged stakeholders. We work closely with our community members in a variety of activities to help promote engagement, education, and greater awareness of clinical research.

As CISCRP continues to support a growing number of initiatives, our need for more community volunteers and participants continues to also grow. We want to invite new CISCRP community members to lend expertise to our outreach and awareness programs. If you or someone you know are interested in participating in any of our outreach and awareness initiatives, please contact us today!

Read on for a description of our many community engagement opportunities and how you can get involved:

AWARE for All Panels
Throughout the year, CISCRP holds health education events, called AWARE for All, in different cities around the country. As part of each AWARE for All program, we put together a panel of patient speakers, advocates, and/or caregivers to share their experience of clinical trial participation with the audience. We are always looking for new community members to join the AWARE for All panels and share their own story. To view our upcoming AWARE for All events, click here. If you are interested in becoming an AWARE for All panelist for a future event, contact Ellyn Getz, ellyngetz@ciscrp.org

Editorial Panels
Editorial panelists play an important role in many of CISCRP’s programs and services. We use editorial panels to review all of our educational resources and materials and to review plain language summaries for our Communicating Trial Results service. Patients, caregivers, advocates, and research professionals are all invited to join our editorial panels and help contribute varying perspectives to these reviews. To learn more about becoming an Editorial Panelist, click here.

Patient Advisory Boards
CISCRP organizes Patient Advisory Boards for research sponsors, contract research organizations (CROs), and research centers looking for patient feedback on various clinical research related activities. This includes review of study protocols, informed consent forms, data collection tools, new clinical trial technologies, and other trial materials. Volunteers are an integral part of our Advisory Boards and we are always looking for new patients, caregivers, and advocates to join these panels. Learn more about joining one of our Advisory Board Panels by clicking here.

Live Patient Panels
Another service we offer to research sponsors, contract research organizations (CROs), and research centers is to bring in a panel of patients, caregivers, or advocates to discuss their view of clinical research and experience with clinical trials. This is a way for companies to get a broader understanding of how important the patient is in the clinical research process from start to finish. These are held at locations all over the US, so there are many opportunities to get involved in a Live Patient Panel. Contact Rachel Minnick, rminnick@ciscrp.org, for more information about how to get involved in a Live Patient Panel near you.

Medical Hero Spotlights
Each quarter, we feature a clinical trial participant or “Medical Hero” in our e-newsletter. This is a chance for patients or caregivers to share their story and experience with clinical trials. The e-newsletter is distributed through our email channels and is also viewable on our website. If you would like us to share your patient story for our next newsletter, contact Rachel Minnick, rminnick@ciscrp.org.

Ambassador Program
If you are a patient who has participated in clinical trials or a caregiver, advocate, or research professional who is passionate about spreading the message of the importance of clinical research, then you may be interested in becoming a CISCRP Ambassador. Our Ambassadors speak at health fairs, conferences, and exhibits in their own city to help educate local members of the public about clinical research. CISCRP provides resources and materials to help assist the Ambassadors with their engagements. To learn more about becoming a CISCRP Ambassador, contact Rachel Minnick, rminnick@ciscrp.org.

HealthUnlocked
If you enjoy communicating and sharing through online social sites, then we invite you to join our community on HealthUnlocked called “Understanding Clinical Trials”. This is a place for patients, caregivers, family members, and the public to share insights and information about clinical trials with a large online community.

If you are CISCRP community member who wants to get involved with any of these programs, please contact Rachel Minnick to learn more!

By: Rachel Minnick

Including the Patient’s Voice: CISCRP’s Patient Advisory Board Panels Help Organizations Engage with Patients

As one of our fastest growing service areas, CISCRP’s patient advisory board panels, are used by research sponsors, contract research organizations (CROs), and research centers to solicit feedback and gather valuable insights directly from patients and their support network on a variety of critical clinical study-related areas. These may include assessment of protocol/study design, study synopses, informed consent form design, clinical trial medicine kits, and clinical trial technologies.

CISCRP’s unique position as an independent nonprofit organization allows organizations to gather unbiased, meaningful feedback from patients and their caregivers. CISCRP’s close relationships with various patient advocacy groups, patient communities, and study volunteers also play an important role in composing a diverse panel that best represents the desired target audience. To date CISCRP has conducted more than 30 patient advisory board panels.

CISCRP collaborates closely with organizations to organize these panels. As part of the service, CISCRP will work with an organization to develop a discussion guide and patient-facing materials, select and engage panel members, identify a venue, and moderate the panel meeting. Each panel is designed to allow for open dialogue among participants. The size of each panel typically ranges from 6 to 8 individuals and may include patients from varying disease areas, family members, or patient advocates. Depending on the needs of the organization, these panels can meet once or multiple times. CISCRP encourages in-person meetings to build the strongest rapport with patients and their caregivers.

After the panel meeting, CISCRP prepares a detailed report outlining key patient comments and recommendations to deliver back to the organization. Clinical operations teams then utilize these insights to shape proposed clinical trial designs and strategies within the organization. CISCRP’s Patient Advisory Board Panels are an invaluable approach to engaging study volunteers, enhancing their participation experience, and providing insights for ways to improve study feasibility, recruitment, and retention.

Both patients and sponsor organizations have found the experience to be very enriching. One patient who participated in a CISCRP Advisory Board Panel described his experience, “Our patient advisory board meeting proved to be an invaluable experience. We had a unique opportunity to have a voice in the process of how clinical trials are designed and presented to patients. The facilitators from CISCRP were great. We all felt that our opinions were heard, respected, and appreciated which made this a very empowering experience.” At the same time, sponsors value the opportunity to interact directly with patients and develop a better understanding of the patients’ needs. Lysogene’s Chief Patient Access Officer Samantha Parker explained, “The service provided by CISCRP exceeded expectations. The team is clearly well versed in the complex requirements of drug development and were able to quickly apply their established methodology to a new field. The team mastered the necessary balance of empathy and objectivity whilst running the patient advisory board. I will work with CISCRP again in the future.”

For more information about how to organize a Patient Advisory Board Panel at your organization, please contact Annick Anderson.

By: Leslie Perez

Supporter Spotlight: Praxis Communications

In this edition of the Supporter Spotlight, we are pleased to be featuring one of our long-time supporters, Praxis Communications. Praxis has worked with CISCRP to develop creative advertisements for the media campaigns that make up our National Clinical Trial Outreach and Awareness Initiative. They have done this for several of our campaigns and offer this service to CISCRP pro bono. Praxis’ Senior Vice President of Business Development & Strategic Planning, Robert Loll, also serves on the CISCRP Advisory Board.

We asked Praxis to comment on their company’s commitment to raising public awareness about clinical research and how this fits into their organization’s overall mission. We also asked what other specific initiatives – in addition to supporting CISCRP’s National Outreach Campaign – that their companies are working on at this time to raise awareness about clinical research.

CISCRP: Can you describe Praxis’ commitment to raising public awareness about clinical research and how this fits into your organization’s overall mission?

PRAXIS: “Praxis Communications, LLC is a focused recruitment and retention company dedicated to providing unique enrollment optimization solutions for our sponsors. This requires consistent efforts to raise awareness and literacy surrounding clinical trials.

We regularly leverage patient insights, thoughts, and perspectives; from this experience, we’ve learned many deep misconceptions regarding clinical research and what it entails. Educating the public is an essential initiative needed to move toward patient understanding. That’s why we’ve committed ourselves to raising public awareness for clinical research and organizations, such as CISCRP, who advance this common mission.

With Praxis’ extensive in-house capabilities, we have the platforms and tools necessary to spread the message, educate, and raise awareness; we see it as an extension of our mission to disseminate facts about clinical research – doing our part to create a world that trusts, understands, and embraces medical innovation.”

CISCRP: Are there specific initiatives — in addition to supporting CISCRP’s National Outreach Campaign – that Praxis is working on at this time to raise awareness about clinical research?

PRAXIS: “Praxis proudly supports CISCRP’s National Outreach Campaign with creative, digital and analytical services, contributing our resources to this worthy, living campaign throughout the years.

We thoroughly involve ourselves with patient-centered initiatives outside of CISCRP, as well. We attend, present at, and sponsor patient-focused conferences, promote patient perspectives through video series and on our company blog, and take every opportunity to connect with and understand the patient to perpetuate education beginning on the individual level.

In addition, we integrate awareness-raising efforts into our recruitment campaigns whenever possible – we pitch stories to local newspapers near study sites, engage digital influencers to spread awareness online, and hand out educational materials at community events. Our sponsors see recruitment results, and we continue doing our part to spread awareness, one community at a time.

For more information on Praxis, visit www.gopraxis.com.

We want to thank Praxis for their dedication to CISCRP’s mission and for helping to create awareness about the importance of clinical research.

We will spotlight a different supporter or volunteer in each Newsletter, so stay tuned for new features each quarter.

By: Rachel Minnick

Upcoming Advisory Board Meeting

Interested in sharing your opinion on a clinical trial being developed? CISCRP is holding a half-day advisory board for Sciatica on July 31st, in Boston! At the advisory board, we will be discussing various ways to improve the design of a clinical trial for patients with Sciatica. If you have been diagnosed with Sciatica, or pain from lumbosacral radiculopathy and are interested in sharing your opinion on how to make a clinical trial better for other patients with the same condition, please contact Nova at NGetz@ciscrp.org  or fill out this brief questionnaire by clicking here to see if you are eligible.Thank you!

CISCRP Collaborates with Sanofi US for AWARE for All Newark

By: Leslie Perez

CISCRP is delighted to announce a unique collaboration with Sanofi US for the upcoming AWARE for All event in Newark, New Jersey. This event will take place on Thursday, September 28, 2017 from 5:00PM – 8:00PM at the Paul Robeson Campus Center at Rutgers University. AWARE for All is a free educational program that provides information and resources on the clinical research process to help the public make informed decisions about their health. The event serves as a platform for dialogue between local patients, members of the public, and advocacy and research professionals.

This particular AWARE event will have a specific focus on diabetes research and will highlight the importance of diversity in clinical research. The day’s agenda includes free health screenings, food, prizes, and giveaways. There will also be informational exhibits, as well as a patient and professional panel discussion about participation in clinical research. The event will end with a Medical Heroes Appreciation Ceremony, honoring those who participate in clinical trials within the greater Newark community.

A special project, being developed in conjunction with this AWARE Newark program, is a “Pop-up Pharmacy” that will be set-up at a nearby mall.  This will serve as a temporary store front; to attract the community’s attention, the pharmacy will have a sign inviting the public to learn about opportunities to receive free health screenings. The inside of the pharmacy will be filled with walls of empty shelves, demonstrating what it would be like without clinical trials and life-saving, life-changing therapies. There will also be greeters within the pharmacy, engaging with visitors, and providing them with information about clinical trials. This project was initially proposed by our Global Outreach Agency Langland at our Ideathon event this past September as a creative way to create awareness around the importance of clinical trial participation to advance public health. The pharmacy will go live during the week of the AWARE event.  There will be a video created to showcase the impact of the pharmacy, and this video will be accessible to those who are unable to attend in person.  CISCRP will publicize the details of how to access the video at a later date, but we expect it to be available a few weeks after the live event.

CISCRP and Sanofi US are looking forward to bringing this public health event to Newark and hope to raise awareness of clinical trials in a new community setting.  Register for this free event today!

 

Letter from the Editor, July 2017

Dear Readers,

I hope you are all having a wonderful Summer and enjoying the warm weather!  I’m excited to share some updates and information about what’s been going on at CISCRP and what we’re looking forward to in the coming months.

In this edition of our newsletter we are honored to be interviewing Rhonda Monroe in our Medical Hero Spotlight.  Rhonda is an advocate for women’s heart health and shares her personal story of participating in a clinical trial for her heart disease.  We are also featuring two leading organizations, Biogen and TransCelerate, in this quarter’s Supporter Spotlight.  You can read more about their contributions to our latest Clinical Trials Supplement that appeared in the May edition of USA Today.

We are also including an article on CISCRP’s 2017 Perceptions & Insights Study to give you an in-depth look at how we conduct the study and analyze the results.  This study, done in 2013, 2015, and now again in 2017, is a staple of CISCRP’s Research Services and has become an essential tool for gaining a better understanding of public and patient perceptions of clinical research to improve trial participation and experience.

In other news, we are honored to thank and recognize WIRB-Copernicus Group® (WCG) for its recent support of CISCRP’s Medical Heroes 5K Run & Walk, held last month in Chicago.  Additionally, on Tuesday, June 20th, a day after the 5K, WCG held a reception, “Discovering New Depths of Clinical Research with WCG,” at the Shedd Aquarium in Chicago, in honor of CISCRP.  During the reception, WCG presented CISCRP with a generous donation to support CISCRP’s many patient education and outreach programs and initiatives.  We are so thankful to WCG for their continued support of our programs and initiatives.  You can read more in our press release about the donation and support.

In upcoming events news, CISCRP is gearing up to host several AWARE for All Clinical Research Education days in Jacksonville, FL, Newark, NJ, Chicago, IL, and Washington, DC this Fall.  These free community events are a chance for patients and the public to learn more about clinical research through presentations, exhibits, and access to free health screenings, food, and giveaways.  Be sure to check our Upcoming Events page for new AWARE for All city and date announcements, coming soon!

And if you’re a researcher or site looking for educational materials about clinical trial participation be sure to check out the CISCRP Store for brochures, posters, and videos that you can use to educate your patients about clinical research.  Interested in co-branding our brochures for use at your sites?  Contact me at rminnick@ciscrp.org for pricing and options.

I wish you all the best and hope you will keep CISCRP in your thoughts.

Thanks for Reading,

Rachel

Clinical Research Essential to Understanding Heart Disease, Advocate Says

By Shelly Reese

In 2004, five days after giving birth to her third child, 36-year-old Rhonda Monroe nursed her newborn daughter, laid her in her cradle, and suffered a massive heart attack.

“I felt like an elephant was sitting on my chest,” says Rhonda, who was living in Charlotte, NC at the time. “I vomited and called 911.”

Despite Rhonda’s classic symptoms and a confirming EKG by the paramedics, doctors did not diagnose her condition for nearly a week.

“I kept telling them. ‘I’m having a heart attack,’ but I wasn’t an overweight middle-aged white guy, so they kept saying, ‘You can’t be having a heart attack.’”

A second EKG ultimately showed Rhonda was indeed experiencing a heart attack and further examination showed why: five of her coronary arteries had dissected. Blood was leaking through tears in the layers of her artery walls and the trapped blood was causing the artery walls to bulge inward, constricting the flow of blood to the heart.

Rhonda underwent a quadruple bypass and later had a defibrillator implanted, but she continued to suffer from chest pain and poor circulation. In February 2005 she went to see a heart specialist in Washington, DC only to discover she had congestive heart failure and her arteries were once again blocked.

“They said, ‘There is nothing we can do and nobody is going to operate on you because you are too high a risk,” she recalls. Rhonda laid in MedStar Washington Hospital Center for several weeks trying to convince doctors she should be a surgical candidate. In the midst of her lobbying efforts, Dr. Lowell Satler approached Rhonda with the opportunity to participate in a clinical trial exploring whether a Cypher drug-eluting stent could benefit patients who had already undergone bypass surgery.

Having suffered adverse reactions to heparin and some other heart medications, Rhonda had concerns about the use of a drug-coated material but was none the less eager to participate in the trial.

During her months-long recovery from bypass surgery she had learned a lot about heart disease and clinical research.

“I did as much research as I could so I could be a well-informed partner in my healthcare, and what I learned is that women aren’t invited to participate in clinical trials as often as men. That helps explain why when I went to the hospital in 2004 they didn’t take me seriously. I had a classic Hollywood heart attack, but nobody paid any attention because I wasn’t a middle aged white guy. So when I had a chance to participate in a trial, my attitude was, ‘Pick me! Pick me!’ I participated because I didn’t want anybody else to be turned away the way I had been.”

The trial involved undergoing a balloon angioplasty in which two stents coated with anti-rejection medication were inserted into Rhonda’s heart to provide a scaffolding that would hold the arteries open. Afterward she would take Plavix for a year and undergo monitoring. Unfortunately, the surgery did not improve Rhonda’s ejection fraction — a measure of the heart’s pumping efficiency – or ease her pain.

Fortunately for Rhonda, although the stents failed, her persistence won over Dr. Steven Boyce, who ultimately agreed to perform a complicated surgery that involved a repeat bypass procedure, surgical ventricular reduction to remove a damaged section of her heart, and transmyocardial revascularization, which involved drilling 15 holes in her heart with a laser to promote additional blood flow.

The surgery worked. Today Rhonda, who now lives in Bethesda, Md., is an advocate for women’s heart health and patient education.

Looking back on her experience with clinical research, Rhonda has no regrets about participating in a trial and advises others to consider doing the same. “Do your research and, if you think it will work for you, get involved. Even if it doesn’t benefit you personally, the information helps others.”