The purpose of the Registry

Approximately 12,000 adults and children are diagnosed with bone and soft tissue sarcoma in the United States annually, accounting for 1% of all malignancy. It is well accepted that surgical removal of the tumor, either by amputation or limb-salvage, is required to optimize long-term survival. With modern techniques, limb-sparing surgery is performed for nearly 90% of tumor excisions. There are many options for successful reconstruction of a skeletal defect after tumor resection; however, the choices that would allow for the best result for an individual patient are often unknown. Many patients will survive for decades after their treatment, so the extended durability and function of the reconstructions are important. Because sarcoma is a relatively rare subtype of cancer, and the characteristics of patients and tumors are so varied, it has been challenging to obtain the necessary data needed to compare different surgical treatments. The long-term goal of this research is to create a prospective database that allows for determination of the surgical treatments that optimize function and quality-of-life (QOL) for sarcoma patients.

The objective of this project is to create a prospective, patient-centered virtual registry of individuals with a bone or soft tissue sarcoma. Registries are often employed to aid in outcome analysis of rare disorders. In cancer, registries are typically designed to determine oncologic outcomes such as local recurrence, disease-free survival, and overall survival. These outcomes are unquestionably important, but they overlook the individual patient’s experience and fail to adequately assess postoperative function, pain, or overall QOL. This project closes that critical gap.

Information regarding function and QOL are of paramount importance both to patients and providers. For patients, this is a unique and novel opportunity to bring their individual experience to the forefront of sarcoma research: to become partners in the advancement of treatment of their own disease, and to allow them to help future adults and children afflicted by sarcoma. For surgeons, functional measures are of particular utility in determining the optimal limb-salvage techniques. To date, most of the investigations driving clinical decision-making have been single center retrospective analyses with limited results. As our registry would not be bound by the restrictions of a single institution, we would improve the robustness of any conclusions. The data made possible by this registry would have the potential to change clinical practice and improve patient outcomes.

Ours is the first and only multi-institutional, patient-centered sarcoma registry.

Our database will utilize functional and QOL measures, entered directly by the patient, to follow short- and long-term outcomes for a multitude of tumors and methods of surgical reconstruction. This approach will be appealing to patients and providers because of

• the emphasis on the experience of individual patients with sarcoma,
• the additional informational and support features possible with an online database, and
• the large amount of information that will be available to compare treatment strategies.