Home » Sarcoma Centers Registry FAQ
More about the Sarcoma Centers Registry – a worldwide database project administered by SARC. Planned for launch in Spring 2024, this tool will assist in sarcoma patient decision-making and provide a much needed resource for sarcoma patients, caregivers, and clinical communities across the globe. All centers included in the Registry must meet objective, qualifying criteria.
As of November 2023 these criteria are still being defined, but will include:
The new Registry will replace the current SARC Sarcoma Centers listing and map. Current member institutions listed will have to apply for inclusion in the Registry.
The Sarcoma Centers Registry will be a comprehensive resource with detailed information regarding each center’s clinical and administrative structure, clinical and scientific resources, and organizational structure with a detailed description of their faculty, staffing, and associated programs (e.g. in-house sarcoma registries, patient volumes, patient advocacy, clinical and scientific research, patient awareness, and community outreach).
Each center will be required to report:
Over the last two years, SARC leadership has realized that other sarcoma foundations are referring patients to SARC’s list of collaborating sarcoma centers – primarily large, academic centers in the US, UK, Europe, and Australia – to find “sarcoma centers of excellence.” SARC’s existing list of centers were selected as sites for our sponsored clinical trials, therefore, total programmatic reviews and characterizations were not required per se. With this realization, SARC began reviewing online resources for sarcoma patients.
Naturally, other sarcoma foundations have lists of sarcoma centers. One sarcoma foundation focused on a specific subtype of sarcoma performed a review (independently of SARC) of existing sarcoma centers lists and determined that SARC’s was more accurate than others “by orders of magnitude.” Further, some lists focus on individual physicians rather than the centers.
Soon after learning these findings, SARC participated in a global advocacy call arranged by another sarcoma foundation, during which European and US-based sarcoma advocates urged SARC to expand the depth and geographic reach of its sarcoma centers lists. In parallel, other stakeholders, SARC’s Research Advocacy Council, and research collaborators also strongly encouraged SARC to develop new patient-facing programs including, and most acutely, a broadened and comprehensive sarcoma center registry.
The Sarcoma Centers Registry planned launch is in Spring 2024. As of November 2023, SARC is soliciting applications from interested sarcoma centers worldwide. In parallel, our team is defining the scope of the program elements that will serve as final criteria for centers to be listed and is developing the database and website functionality, including the ability to search and filter by selected criteria. This requires a significant investment in time and resources, but SARC is working hard to make the Registry available as soon as possible.
The purpose of the Registry is to provide patients and caregivers access to comprehensive data to enable more informed decision-making as to where they seek primary or secondary treatment/second opinions. It is SARC’s position that all sarcoma centers that meet the baseline criteria to be included in the Registry will be able to provide expert treatment to patients regardless of subtype. The Registry may include personalized statements by physicians at each Center in which they can indicate their own clinical and/or scientific interests in sarcoma, potentially including a focus on one or more sarcoma subtypes, thus permitting patients and caregivers to find physicians who state a particular interest in a specific sarcoma subtype.
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