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:

• Clinical study registries
• Medical research registries
• Clinical trial registries
• Clinical trial data specific registries
• Clinical trial data management registries
• Oncology research registries
• Hospital research registries
• Disease research 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:

• Is the drug or therapy working?
• How is patient data trending?
• Are my patients’ outcomes improving?
• Do I have enough patient information to present a useful research paper at an annual medical conference/meeting?

In a nutshell, a patient registry can provide the following value for the patient and the supporting medical community:

• Easily and effectively collecting secured data to apply to specific cancer research projects
• Accessing and tracking of new therapies
• Monitoring and  tracking combination therapies
• Monitoring and  tracking patient safety or serious adverse reaction events
• Promoting or generating necessary warnings or awareness information
• Rapidly collecting data from multiple locales simultaneously to improve the quality of data collection, data integrity, and reporting.
•  Synthesizing the collected data to systematically mine it for specific, critical data
•  Strengthening/enhancing decision making regarding medical treatment protocols
• Creating reports, news articles, and publications from data evaluation and outcomes.

There are state, regional, national, and even international patient registries.  Patient registry data is reflected in the ability to gather facts about:

• The prevalence of risk factors in treatment (therapy/drug) options
• Public health program information
• Patient care guidance
• Regional, state, and national benchmarks for participating hospitals
• Data for the medical community – specifically researchers, oncologists, and clinicians – to make a difference in the war on cancer. This will enable public health professionals to understand and address cancer incidences and establish cancer mortality statistics.

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?

• You contribute valuable data that can impact and promote the discovery and expansion  of new/improved cancer fighting treatment options and recurrence treatment options.
• You help discover major risk factors for cancer.
• You make a difference in the overall survival improvements for patients because of improved and new treatment options made available.
• You give yourself an opportunity to advocate for yourself and others by the direct opportunity to join hands with patients and the medical community to FIGHT AGAINST CANCER.
• YOU MATTER . . . and therefore YOU CAN MAKE A DIFFERENCE IN THIS FIGHT!

For information on patient registries, contact Annie Achee at annie@nlmsf.org