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Tuesday, September 9, 2008

Sarcoma Patient Registry

For those of you who are dealing with the impact of Desmoid tumors (in my case my sister), please do check out the Desmoid Tumor Research Foundation.

Please join DTRF in supporting the Sarcoma Patient Registry developed by The Sarcoma Foundation of America. You can start the process by going to DTRF's website ( On the bottom left hand side of the homepage there is a link to the Patient Registry information.

Some background information of the registry-

Due to the fractured nature of the US healthcare system, there is currently no universal database that provides access to information on sarcoma patients. This makes it challenging for researchers to gather enough data to fully study genetic pathways and identify therapeutic candidates for all but the most common sarcoma sub-types. The SFA hopes to help address this issue by creating a comprehensive Sarcoma Patient Registry that will track the progress of patients with all forms of sarcoma.

The current goal of the Registry is to gather new data from patients that have a current diagnosis and future patients as identified by physicians and organizations that have already joined with us in this effort. The Sarcoma Patient Registry is designed to be a powerful source of information for scientists on the hunt for markers, genetic pathways and effective therapies for sarcomas. When patients enroll in the Registry, they also have the option on the consent form of being notified about current or future clinical trials for their specific subtype. Registry staff can then inform patients about possible clinical trials. Trial accrual is an important factor in finding new weapons to treat sarcoma. Accrual is a struggle for all cancer types and an even more critical issue when focusing on a rare cancer and an even rarer subtype. Patient contact and identifying information is ALWAYS kept confidential.

Eventually, the goal of the Registry will be to become a repository of data for all sarcoma patients, capturing information on individual patient diagnosis, treatment and outcomes. The overarching future goal is for all sarcoma patients to be entered in one national database and to be a virtual historical control group that replaces/augments the need for control cells in clinical trials on sarcomas, and thereby encouraging increased interest in pursuing these costly trials with low accrual rates.

The process of enrollment in the Registry is that patients are either informed by their doctor about the Registry in the form of an introductory packet or brochure, or they reach out to the Registry by way of an e-mail through a link on the Foundation's Registry page. The patient is then contacted by the SFA Registry staff. The initial contact is to obtain general demographic and tumor data and then the case is suspended pending the receipt of the supporting medical records by the Registry. The patient is sent a packet that contains an introductory letter about the Registry, a Registry Brochure, a Registration Form, and a Medical Release Form. The Medical Release Form and Registration forms are then sent back to the Registry staff for processing. The Registry contacts the patient’s doctors to request copies of the patient's medical records, which has been authorized by the patient. By reviewing the requested medical records, the trained registry staff will then enter the data into the Registry to complete the cancer case. This process will allow for the most complete and accurate data to be included in the Registry. The Registry staff will then do a follow up every 6 months in order to monitor the patient's progress and update any new diagnoses or treatment information in the registry

Marlene Portnoy
The Desmoid Tumor Research Foundation

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