Supporting Equitable Cancer Research – Development of the RARE® Registry

Posted June 13, 2023

National Black Family Cancer Awareness Week, June 15th-21st, 2023

Compared to all other racial and ethnic groups, Black individuals experience higher death rates for many cancers.1 Racial and ethnic minority groups are also historically underrepresented in clinical research, meaning research results may not reflect how these groups respond to medical interventions or experience different diseases. Each year, Black Family Cancer Awareness Week brings attention to these health care disparities. The Congressionally Directed Medical Research Programs (CDMRP) requires all applicants proposing clinical research to describe which racial and ethnic groups will be included and the rationale for their inclusion. CDMRP and the Rare Cancers Research Program (RCRP) are committed to supporting equality in research by funding awards that include underrepresented populations.

Supporting Equitable Cancer Research – Development of the RARE® Registry
Joan Levy, Ph.D., Melanoma Research Alliance

Dr. Levy Dr. Joan Levy (Photo Provided)

In fiscal year 2021, the RCRP awarded a Resource Community Development Award to Dr. Joan Levy and team from the Melanoma Research Alliance to support research on acral melanoma (AM). AM is a rare melanoma subtype that represents less than 3% of melanoma diagnoses in non-Hispanic white populations but accounts for a disproportionately higher number of melanoma cases among individuals of African, Hispanic, and Asian descent in the United States.2 Dr. Levy’s team is building a direct-to-patient registry for patients with acral and mucosal melanoma (a second rare sub-type of melanoma) called RARE®, available at, using patient-reported and clinically abstracted data and collecting samples from diverse patients across the United States. De-identified data collected from RARE® will be made freely available to scientists and clinicians worldwide to facilitate equitable cancer research in acral melanoma.

"When it comes to rare melanoma subtypes, it sometimes feels like we have more questions than answers,” said Dr. Levy. “It’s difficult to study these patient populations due to their relatively low numbers, which is exactly why RARE® is so important.”

RARE® will include a database of information related to treatment history, quality of life, and patient demographics and will be complemented by a tissue biorepository of acral and mucosal samples. The RARE® Registry will empower patients to join a growing and vibrant community that is helping to inform research to answer critical questions about risk factors, diagnosis pathways, treatment effectiveness, adverse events, and quality of life for patients with acral and mucosal melanoma. Additionally, published data in the U.S. on acral melanoma has predominately been from the non-Hispanic white population. Development of RARE® registry will enable to learn more about acral melanoma across the true racial and ethnic diversity that is reflective of the disease.

Dr Levy Figure 1 Figure 1: Dr. Joanne Levy from the Melanoma Research Alliance received a Resource Community Development Award from the Congressionally Directed Medical Research Programs’ Rare Cancers Research Program to study acral melanoma. The figure shown is an example of data from a direct-to-patient registry called RARE®, created by Levy and her team. Collected from patient data, the RARE® registry captures real-time information that is accessible by researchers in the field. This figure shows the distribution of responses to two questions: (A) Where in the body did your acral melanoma originate? (B) What general stage was your acral melanoma when first diagnosed? (Image courtesy of the Melanoma Research Alliance)

(The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Defense position, policy, or decision)


1National Cancer Institute. Cancer Disparities. Accessed May 2, 2023.

2Alicea GM and Rebecca VW. 2022. Un-fair skin: Racial disparities in acral melanoma research. Nature Reviews Cancer. 22(3):127-128. doi: 10.1038/s41568-022-00443-8. PMID: 35075287, PMCID: PMC9844516.

Public and Technical Abstracts: Building a Community to Advance Research for Patients with Acral Melanoma

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Last updated Tuesday, June 13, 2023