Frequently Asked Questions
Anyone 18 years of age or older that has been diagnosed with acral, mucosal, or non-acral cutaneous melanoma; or a caregiver (18 years of age or older) who has provided care for a deceased family member with acral, mucosal, or non-acral cutaneous melanoma.
The RARE Registry is exclusively for patients with acral, mucosal, and non-acral cutaneous melanoma. However, there are other registries that focus on uveal melanoma that you can join, including:
- Melanoma Research Foundation’s CURE OM (the Community United for Research and Education of Ocular Melanoma),
- A Cure In Sight™’s Insight Patient Registry for patients with ocular melanoma (also known as uveal melanoma).
- Global Uveal Melanoma Patient Registry (Richard Carvajal, Columbia University)
Yes, patients with non-acral cutaneous melanoma are welcome to join the RARE Registry to serve as the control or comparison group.
In the RARE Registry, data from patients with non-acral cutaneous melanoma will be compared to data from patients with acral and mucosal melanoma, to account for variables that are similar across all melanoma types and not specific to the rare subtypes.
Participation in the RARE Registry is currently limited to acral, mucosal, or non-acral cutaneous melanoma patients and caregivers in the United States. MRA plans to expand eligibility to patients and caregivers in additional countries in the near future.
RARE registry participants can not directly interact with other participants through the registry itself. You can join and participate in conversations on the Melanoma>Exchange online community.
Additionally, participants will be able to monitor their own health history in comparison to the aggregated and de-identified survey responses from all RARE Registry members through Insights and tools available on the participant dashboard.
We will also host periodic webinars, virtual discussions, and events where the RARE community can come together.
You’re more than welcome to seek any resources you need to help with completing RARE surveys. Here are some avenues of support:
1.You can reference any medical documents or your electronic health record
2. You can ask your healthcare provider or doctor questions that arise
3. Your caregiver, family member, or friend can be a great source of support
4. You can contact firstname.lastname@example.org for assistance at any time
No. There are no fees associated with participating in the RARE registry.
(Please note that standard internet fees and data fees from your service provider may apply.)
No, participants in the RARE Registry will not be compensated financially for their time.
The RARE Registry would appreciate your suggestions. A key component of the RARE Registry is its community-centric focus, and we strongly encourage participants to provide feedback by emailing your comments, questions, or concerns to email@example.com.
A patient registry creates a central database where patients respond to questions and enter information about a specific condition or disease that affects them personally.
Patient registries are confidential and designed to respect patient privacy as they share information.
Information submitted through surveys and provided documents are standardized and can then be used by researchers and clinicians to inform important health research that can drive discoveries and new treatments.
The RARE Registry is a free, web-based tool for patients with acral, mucosal, and non-acral cutaneous melanoma. By providing detailed information about yourself and your melanoma journey, you are providing researchers with critical information needed to drive research forward about these rare melanoma subtypes.
The RARE Registry gives you the opportunity to be part of research needed to inform critical questions about risk factors, genetics, epidemiology, diagnosis pathways, treatment effectiveness, adverse events, natural history of disease, clinical trial awareness, and quality of life for patients with acral and mucosal melanoma.
The RARE Registry empowers patients and caregivers by providing the opportunity to be active and engaged partners in critical research. Through the RARE Registry, melanoma clinicians and researchers will get access to a real-time, personally de-identified (removes personal identifiers like names, birth dates, etc.) database of information needed to drive research forward for acral & mucosal melanoma.
As a participant in the RARE Registry, you receive many indirect benefits, including:
- Membership into a community of patients, survivors, and caregivers who have been impacted by rare melanoma subtypes.
- Collaborate with researchers who are focused on and leading progress in rare melanoma research.
- Access to written and video research updates, virtual meet & greets, and other in-person and virtual events created specifically for RARE Registry participants.
- Insight into where you fit – based on prior treatments, age at diagnosis, location, and more – compared to other RARE Registry participants.
- Alerts about potentially relevant clinical trials based on your survey responses.
- Increased understanding of your disease factors in relation to those of the rare melanoma population in general through use of “Insights” provided by RARE.
- Satisfaction in knowing that you are helping to advance research into rare melanoma subtypes that may one day benefit you or future patients.
There are several registries that exist for the melanoma community, each with its own focus and benefit to the patient community. These registries include:
- Melanoma Research Foundation’s CURE OM (the Community United for Research and Education of Ocular Melanoma),
- A Cure In Sight™’s Insight Patient Registry for patients with ocular melanoma (also known as uveal melanoma),
- Global Uveal Melanoma Patient Registry (Richard Carvajal, Columbia University),
- Collaborative Ocular Oncology Group (J. William Harbour), Melanoma Community Registry (OHSU; for cutaneous melanomas), Melanoma Registry at Mayo Clinic Florida (for cutaneous melanomas),
- Pan-Canadian Melanoma Research Network (CMRN; for cutaneous melanomas).
The mission of the MRA is to end suffering and death due to melanoma. To this end, we will work to collaborate with and support other melanoma registries to further the common goal of advancing research and cures for all patients with melanoma.
It’s by and for patients with acral & mucosal melanoma: The RARE Registry is the only registry specifically focused on patients with acral & mucosal melanoma and is formed and led by patients and caregivers with these rare subtypes.
The RARE Registry is interactive: Using the RARE Registry, you can provide valuable data to researchers through simple surveys that capture details about your journey with acral or mucosal melanoma. The RARE Registry is then able to provide you with regular personalized insights and alerts about your condition – including articles, resources, and other tools from the Melanoma Research Alliance.
The RARE Registry is web-based but is mobile friendly: Many patient registries don’t think about the experience of USING the tools – the RARE Registry is different. From day one, we have focused on user experience and are proud to offer you the easy-to-use web-based site that is also mobile-friendly.
The RARE Melanoma Registry is an initiative led and sponsored by the Melanoma Research Alliance (MRA). MRA was formed in 2007 and is the largest non-profit funder of melanoma research worldwide. Since its founding, MRA has committed $143 million, and leveraged an additional $400+ million from outside sources, to fund life-saving melanoma research needed to achieve its mission of ending suffering and death due to melanoma. Learn more about MRA at CureMelanoma.org.
The RARE Registry objectives include:
- Establish a direct-to-patient registry of patients with acral & mucosal melanoma to inform critical questions about risk factors, genetics, epidemiology, the patient experience, diagnosis pathways, treatments offered, adverse events, natural history of disease, clinical trial awareness, and quality of life. As a comparison of disease journeys, patients with non-acral cutaneous melanoma (the most common type of melanoma) will be included in the registry.
- Provide patients an opportunity to have an active role in advancing research on rare melanomas by sharing data, receiving near-term insights on data gathered through the registry, posing key questions for future research, and serving on governance committees.
- Provide researchers access to de-identified information to develop a more comprehensive understanding of acral & mucosal melanomas.
The RARE Registry logo subtly reinforces the goals of the project – people coming together to contribute towards a greater narrative and becoming stronger because of it.
The RARE Registry logo also includes a small nod to the Melanoma Research Alliance ‘target’ symbol.
You can join the RARE Registry by following instructions on the RARE Registry website (raremelanoma.org). Caregivers can join on behalf of a deceased acral or mucosal family member.
Participation in the RARE Registry is completely voluntary. It is your choice to participate. You may also withdraw and stop participating for any reason and at any time.
You will be asked to complete eight surveys, with your information on the following topics: demographics, disease history, genetic & biomarker testing, monitoring cancer progression, overall health & lifestyle, treatment overview, treatment timeline, and quality of life. On average, it may take you anywhere between 30 to 75 minutes to complete the initial set of surveys. Every four months you will be asked to fill out a new quality of life survey and update your treatment timeline (this will take significantly less time than what is required to complete the initial surveys).
Your participation is entirely optional, and you may withdraw at any time.
Except for the treatment timeline, you will not be able to change your responses once you complete a survey. If you need to make an edit to your responses, you can contact firstname.lastname@example.org, and RARE Registry staff can make an edit for you.
You may make edits at any time to the Treatment Timeline survey. For example, if you stopped or completed a treatment, or if you start a new treatment at any point in the future. To edit your treatment timeline after your initial submission, click on the survey from the survey dashboard and click on the blue "Edit/Add responses" button. When you are finished making the desired changes to your treatment timeline, submit the survey to finish editing. Resubmission is required to record your changes.
Yes! We highly encourage you to upload medical reports (i.e., genomics/tumor biomarker, pathology, and surgical) to your dashboard. Only trained MRA staff will have access to your reports.
De-identified medical data from any medical reports you upload will help validate information submitted through the community’s survey responses. You will be able to upload medical reports through your patient dashboard by clicking on “Upload Medical Reports” underneath the drop-down.
You will have the opportunity to receive clinical trial alerts that may be of interest, and personalized based on the information you have provided to the registry (e.g., subtype of melanoma). If you do not want to receive these alerts you can opt out upon registration, by updating your account profile, or by notifying the MRA at email@example.com.
You can learn more about clinical trials and the important role they play in advancing research and individual patient care at curemelanoma.org/clinicaltrials.
There are plans in the near future for an additional study, where RARE participants will have the opportunity to provide access to their tissue samples for genomic and other analyses.
Information entered into the RARE Registry by you and by other participants will contribute to a powerful real-time database that can accelerate research focused on these rare subtypes of melanoma. Your information will be de-identified (personally identifiable factors are removed) when sharing with researchers, other participants, or third parties following guidance provided by the U.S. Department of Health and Human Services (HHS) to comply with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.
The RARE Registry is designed to keep your information secure and confidential using industry-leading encryption technology. Information can be accessed via the RARE Registry Research Portal where information that you enter is de-identified. This means that information accessed through the Research Portal is unlikely to be traced back to you.
An Institutional Review Board (IRB) is an independent ethics committee that reviews research studies to protect the rights and welfare of research participants. The RARE Registry project has been approved by North Star Review Board.
The backend systems that power the RARE Registry are operated by Ordinal Data, Inc on a secure, HIPAA-compliant platform.
Of course! The RARE Registry offers you the option to request a PDF version of your information that can be easily shared with your care team or family at your discretion. You can export your survey responses by logging into your RARE Registry account, selecting “Manage Account” and then “Export Your Data.”
The RARE Registry wants to make sure that you clearly understand how and why your health data is being requested. We also want you to be fully informed about the risks and benefits of participation. Documented informed consent will allow your data to be used in future research. The informed consent statement, along with other materials, have been reviewed and approved by North Star Review Board.
Yes, of course. You can opt out of all RARE Registry email communications or leave the registry altogether by emailing MRA at firstname.lastname@example.org.
We take your privacy very seriously and have policies and processes in place to safeguard your identity and protect the health information you share with us. Your personally identifying information such as name, date of birth, etc. and other health information are only shared with the MRA staff who has special training in human subject research. Any personally identifying information is removed before sharing with researchers or other third parties. Please review the informed consent document for more information.
If you have questions or concerns, please contact us at RARE@CureMelanoma.org
We hope that data from the RARE registry will help research and clinical trial progress more quickly and efficiently for patients with acral and mucosal melanoma.
The RARE Registry includes a Research Portal that compiles data and releases it to researchers and clinicians in two ways.
- The RARE Registry includes an open-access data portal that shows visualizations of de-identified, aggregate results of participant entered and associated clinical data in the form of compiled graphs, charts, and tables.
- MRA can provide researchers access to more detailed, non-aggregated de-identified data. To apply, researchers need to submit a proposal describing the intent of their use of data from the RARE Registry, which must be reviewed and approved by the MRA. Following an approved proposal, the researcher signs an official data use agreement (DUA) with the MRA.
Please email email@example.com.