Creating Community & Driving Rare Melanoma Research Forward:
The Launch of the RARE Registry
There’s real power and strength in each individual sharing their story.”
DR. MARC HURLBERT
For patients facing rare melanomas, or any rare disease for that matter, getting the right diagnosis and effective treatment can be a real challenge. That’s because, while significant progress has been made in treating melanoma broadly, this progress doesn’t always extend to rare subtypes due to the limited number of patients and samples available for study. In melanoma, while patient-reported clinical registries have been launched for uveal melanoma to address this unmet need; no such registry existed to support research into acral and mucosal melanoma. MRA stepped up to this challenge.
Patients with these rare melanomas are often the only—or one of very few—patients at their clinic with this diagnosis. To date, it has been difficult for patients to connect and share information as well as for researchers to access the clinical information, tissue, and genomic profiles that they urgently needed to better understand the causes and possible treatment options for these melanomas.
And yet, while patients are willing to share information and researchers want to study it, the challenge is connecting the dots so that patients and researchers can move the needle, together.
J.B. Ward, mucosal melanoma survivor & patient advisory committee member
Julie Dewey, mucosal melanoma advocate & patient advisory committee member
Dr. Sapna Patel, medical advisory committee member
Trena Brown, acral melanoma survivor & patient advisory committee member
NOT ALL MELANOMAS ARE THE SAME
While roughly 90% of melanomas form on sun-exposed skin, rare melanoma subtypes — such as acral and mucosal — form in or on parts of the body that are shielded from the sun (such as palms of hands, soles of feet, under fingernails, or nasal cavities). Each year, about 5,000 patients are diagnosed with these subtypes. Due to their relative obscurity, patients facing these rare subtypes are often diagnosed later and have poorer prognoses.
To bridge this divide, MRA began work in 2020 to launch RARE, a mobile app-based, bidirectional, and interactive registry for patients facing acral or mucosal melanoma with an anticipated launch in 4th Quarter of 2021. Through RARE, researchers will gain critical insight into the risk factors, treatment histories, and unique experiences of patients facing these subtypes in order to drive research forward.
“The RARE registry was the idea of patients and has been co-created with a group of patients, caregivers, physicians, and researchers. RARE is an opportunity for patients with acral and mucosal melanoma to share data about their diagnosis journey, treatments they were offered, and information on their quality of life. It’s a way for people to be actively involved and engaged in research,” says Dr. Marc Hurlbert, Chief Science Officer, MRA, and Co-PI of RARE. “There’s real power and strength in each individual facing a rare melanoma sharing their story.”
Unlike other registries that typically focus on a singular point in time (e.g., baseline survey), RARE will ask patients to provide data over time and will ask important, but often neglected, questions about their quality-of-life. This is important because preserving — and even advancing — quality-of-life is critical to patients and is often overlooked in medical research. In addition, RARE will enable patients to engage with one another as well as the research community in new ways. Doing so will provide a more comprehensive picture of patients facing these rare melanoma subtypes as well as what many patients crave most: community connection.
“One of the things that the RARE registry can do is to tie clinicians and patients together in a community,” explains Dr. Maryam Asgari, Professor of Dermatology at Massachusetts General Hospital, Harvard Medical School, and Co-PI of RARE. “I think there’s a lot of value in understanding what patients want to learn about their disease. It can help the researchers and clinicians focus on gap areas so that we can better deliver care.”
Acral & Mucosal Melanomas
Acral Melanoma: Acral or acral lentiginous melanoma, is a rare type of skin melanoma that forms on the palms, soles of the feet, or under finger or toenails.
Mucosal Melanoma: Mucosal melanoma invades mucosal tissue in the body, including the nasal cavity, sinus lining, mouth, the GI track, vagina, anus, or other areas.
The RARE planning process began in earnest shortly after the COVID-19 pandemic took off, and from day one took a patient-first approach, including how the registry should work as well as its name and branding. MRA staff met virtually with patients every other week for three months, launching a patient advisory committee made up of 12 patients: six with acral melanoma and six with mucosal melanoma to guide and inform all aspects of the project.
“I think this is the first time that I’ve been really engaged in a project where patients were absolutely partners in developing the registry,” says Asgari. “They had just as strong of a voice, if not stronger, than the clinicians and researchers, and I think that struck a chord within me about the value of engaging patients from the get-go.”
Following the creation of the patient advisory committee, MRA staff set out to engage a diverse medical advisory committee. This includes surgeons, dermatologists, oncologists, epidemiologists, data scientists, and more across various institutions and agencies.
This type of convening and leadership has been a hallmark of MRA’s approach, and the patient and medical communities alike are excited. In fact, experts in Mexico City, Mexico and São Paulo, Brazil have already been in talks with the MRA staff and are eager to help translate the information so that the registry can be available in culturally relevant languages for their patients as well.
“Once it’s launched, we’d love to see people really stepping up to engage communities,” says Asgari. “The pivotal next step is to acquire tissue from our participants because that will give us so much more information about the genomics of the tumor, the genomics of the individual, and perhaps how they’re responding to therapy, and how the tumor is changing over time. This can really help us build the armamentarium of novel therapeutics which is, I think, what patients are really craving.”
Patients with mucosal and acral melanoma, and their caregivers, called for an international effort to pool data about the experiences faced by this community. MRA answered that call and assembled a group of patients, advocates, leading scientists, and clinicians to co-design RARE to meet the needs of patients and researchers.”
JULIE DEWEY, MUCOSAL MELANOMA PATIENT ADVOCATE
Unusual or uncommon. Also, unusually great.
Dictionary.com. Rare. www.dictionary.com/browse/rare