More about the Sarcoma Centers Registry – a worldwide database project administered by SARC. The Registry 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.

Sarcoma Centers Registry

What are the criteria to be included in the Sarcoma Registry?

As of November 2023 these criteria are still being defined, but will include:

  • Expertise in sarcoma
  • Multidisciplinary team approach
  • Types and subtypes of sarcoma treated
  • Access to multidisciplinary tumor board
  • Leadership and/or participation in clinical trials
  • Geographic location and reach (underrepresented areas may be afforded some forbearance on a case-by-case basis from certain of the qualifying criteria)
  • Programmatic support for patients and caregivers

How WILL THE centers listed in the registry differ from THE CURRENT SARC SARCOMA CENTERS MAP?

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:

  • An accurate and updated sarcoma faculty roster with individual CVs and disciplines included
  • Sarcoma registry and database, including sarcoma subtypes
  • Sarcoma clinical and surgical volumes and patient-reported outcomes
  • Current clinical trials
  • Sarcoma tumor board data summary
  • Patient advocate activities and relationships

WhY IS SARC CREATING A SARCOMA CENTERS REGISTRY?

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.

When will the registry be available to sarcoma patients and clinicians WORLDWIDE?

The Sarcoma Centers Registry was launched in May 2024. In November 2023, SARC began soliciting applications from interested sarcoma centers worldwide.

How will the Registry help PATIENTS find centers and physicians with expertise in a specific sarcoma subtype?

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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