PRIMARY OBJECTIVES:
I. To create a secure EHR-based registry to allow for the prospective collection of clinical and research data in a collection of rare diseases (bone and soft-tissue tumors).
II. To facilitate the identification and validation of clinical and molecular features that may be associated with prognosis and/or response to therapy in (subtypes) of bone and soft-tissue tumors.
III. To pilot a mechanism that will facilitate future collaboration between institutions for research and analysis of bone and soft-tissue tumors.
IV. To standardize biospecimen collection for correlative biomarker analysis for patients undergoing treatment and surveillance for bone and soft tissue tumors at Ohio State University.
OUTLINE: This is an observational study.
Patients complete quality of life questionnaires and their medical records are reviewed. Patients may also undergo collection of blood samples for up to 2 years, unless otherwise specified in the protocol.
Age
18–any
Sex
ALL
Healthy volunteers
Not accepted
You may be eligible if
Must have a diagnosis or presumed diagnosis of bone or soft tissue tumor as defined by the WHO classification of tumors of soft tissue and bone (4th ed.)
Patient, or his/her designated power of attorney, must be able to understand and approve of the consent to participate.
You may not be if
Prisoners are excluded from participation in the Registry.
Clareo Health | An Electronic Health Record (EHR)-Based Comprehensive Bone and Soft Tissue Tumor Registry
