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Patient Registry
BE INFORMED ABOUT PATIENT REGISTRIES . . .
This article provides a briefing for sarcoma patients about patient registries in terms of what a registry is, its usefulness to the medical community, and what’s in it for you as a patient if you participate and be a part of a registry.
WHAT IS A PATIENT REGISTRY?
A sarcoma or cancer patient registry is an information repository of patient-specific cancer data to help guide a patient registry project. The information contained within a patient registry has the potential to aid researchers who are accessing the confidential data for the express purpose of the need and usefulness of data for specific cancer research projects. A clinical team collecting, analyzing, and understanding the patient-sensitive data being retrieved is the beginning of a research project endeavor.
Patient Registries are established to be managed expertly, under the tightest security protocols. There are many types of patient registries:
REASONS FOR A PATIENT REGISTRY
Patient registry data provided by willing patients can offer valuable information to medical community researchers, oncologists at hospitals, medical centers, universities, and pharmaceutical companies so they are able to conduct important clinical trials. Data collection is valuable for extracting real-world patient results from treatment / medical protocols in order to be able to expand treatment and medical protocol options for patients.
Questions might include:
In a nutshell, a patient registry can provide the following value for the patient and the supporting medical community:
There are state, regional, national, and even international patient registries. Patient registry data is reflected in the ability to gather facts about:
PATIENT REGISTRY VALUE TO YOU
Cancer patient registries provide answers to patientss questions. They identify high risk groups (example: people who receive organ transplants may have twice the risk of getting cancer as the general population).
Registries increase screening in underserved areas through registry data revealing high rates of certain cancers in certain geographical areas, and therefore providing low-cost screening as a result.
Investigating cancer causes – example: In Kentucky’s Appalachian area, lung cancer rates are high, not only due to smoking, but cancer-causing elements have been found within rocks in this area.
In other words, patient registries have been able to make a huge difference in investigational efforts, such as determining proper care of patients with certain cancers, incidence trends among men and women for cancers, and surveillance and interpretation of trends in the U.S., as well as age –specific incidence rates for certain cancers.
Identification of certain cancers that are more prevalent in certain states is important not only for public awareness, but for impacting cancer control planning programs, health insurance, cancer care, and for investigating contaminants.
WHY SHOULD I, AS A PATIENT, WANT TO PARTICIPATE IN A PATIENT REGISTRY EVEN AFTER READING ALL OF THIS?
For information on patient registries, contact Annie Achee at [email protected]
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