Putting Patients First
Today, due to critical advances in melanoma research, patients have more treatment options than ever before. In fact, 13 new therapeutic approaches have earned FDA approval in the last decade.
This drumbeat of progress continues to accelerate; today more than 600 melanoma clinical trials are actively recruiting patients! This is unheard of progress in oncology and serves as a testament to the tenacity and perseverance of researchers, clinicians, and patients alike.
From a patient’s perspective, this progress is awe-inspiring; but it can also be overwhelming to make sense of as you fight for your life.
On the flip side, researchers can’t do it alone. They need active and informed patients who are ready to partner with them to tackle remaining questions and unmet needs with melanoma.
In recognition of this, MRA works to leverage its deep scientific and clinical reach to provide resources for patients and their loved ones — helping them to not only navigate both approved and emerging treatments but also to contribute to the next iteration or treatment breakthrough.
Patient Resources
The MRA website is a library of resources for patients wherever they are on their journey. Broken down by topics from: Just Diagnosed, Melanoma Treatment, Clinical Trials, Patient Resources (including a glossary), and more — patients are armed with information and prepared for battle.
Finding the Right Information
When you or someone you love is facing melanoma, you want information that is accurate and current to help inform your decision making. MRA has patient- friendly resources on melanoma staging (including Breslow Depth and Clark Level), tools for patients who have been recently diagnosed, current and emerging treatment options, and more that is easily accessible to patients.
In 2019 more than 350,000 people accessed online resources from MRA.
Building Community
Finding a group – or a person – that has firsthand knowledge of what it’s like to be diagnosed with and treated for melanoma can be very helpful. That’s why MRA partnered with Inspire to create the Melanoma > Exchange. The vibrant online community is led by patients and caregivers with firsthand understanding of melanoma and clinical trials, and experts from the MRA staff. Whether specific to melanoma or cancer broadly, tapping into a supportive community can help you throughout your melanoma journey.
Since launch, over 3,400 people have become active members of the Melanoma>Exchange.
Demystifying Clinical Trials
Patients are looking for trials, and trials are looking for patients (over 600 melanoma clinical trials are currently enrolling patients), but with strict eligibility requirements, it can be difficult to find a match. That’s why in late 2017 MRA launched its Clinical Trial Navigator in partnership with Antidote.
By answering a few simple questions, patients get a curated list of clinical trials that may be a good match for them and their melanoma. They can print the list and use it as a basis of a conversation with their doctor OR contact study contacts directly.
Since launch, over 10,000 people have used the tool.
Together on the Front Lines
Lara Porzak, a three-time melanoma survivor, and photographer worked with MRA on “Facing Melanoma Together: Portraits of Patients, Loved Ones, & Researchers Together on the Front Lines.” The series, taken in black and white, across five cities in the United States, celebrates the power of research and the roles we all play in advancing this work together.
“We’ve made some real progress, and that’s great, but we aren’t there yet. My kids now have a history of this, too, and I’m also doing this for them.
Discoveries don’t happen by accident; we have to be willing to invest in them.”
— Amanda Eilian
MRA Board Member Amanda Eilian tours Sohail Tavazoie, PhD’s laboratory
Brandon Barniea and his family with William Sharfman, MD
“Research means continuous improvement.
As a survivor, it is uplifting to know there is a community of professionals dedicating their time and energy to provide people like me with better outcomes. They mean so much to me. People who are caring, civic minded, and dedicated to the mission of a brighter future. Not only for melanoma patients, but cancer patients everywhere.”
— Brandon Barniea
“Research really is amazing.
The progress that has been made is so encouraging and it takes us all that much closer to a cure.”
— Christine Eddy
F. Stephen Hodi, MD with his patient Christine Eddy