The Impact of Patient Registries on Research and How You Can Join


A recent article published in Curetoday highlights not only the many new and successful therapies available to cancer patients but it also illustrates how patients can connect to other institutions in order to secure the most effective treatments for their specific disease.

About Rhonda and Jeff

Jeff Meckstroth was diagnosed with stage 4 non-small cell lung cancer with a specific gene abnormality called ALK rearrangement. Life on their 700 acre farm in Ohio would never be the same.

Rhonda, his wife, vowed that she would hunt down the best possible treatment for him. It took four years of intensive research on Rhonda’s part but it was finally successful.

About Jeff’s Diagnosis and Treatment

Secondary malignant growths (metastases) were discovered in Jeff’s lymph nodes, brain, and bones. Jeff joined a clinical trial followed by treatment with two targeted therapies.

His third therapy, Lorbrena (lorlatinib) appears to be effective. Rhonda is continuing her efforts on Jeff’s behalf. She has also added a new dimension which is working with the lung cancer community as a whole.

The Benefits of Registries

Rhonda took on the responsibility of working as an ALK Positive administrator ( ALK Positive is an international online support group.

Rhonda’s contribution to another organization, the Lung Cancer Registry, is to recruit patients and raise awareness of the organization.

When joining a registry, patients submit their health information. This data allows researchers to analyze the disease in order to develop new or improved therapies, methods of prevention and ultimately, a cure.

At the same time, the patients can track clinical trials that may be applicable to their disease.

Finding a Cure

The Lung Cancer Registry is only one of thousands in a community of cancer registries. Although the registries vary in size and source of data, the overall focus is patient support and research.

The benefit to patients is to have access to clinical trials and to the latest research. Researchers and physicians benefit by being able to analyze results of therapies, side effects and quality of life.

A cure for cancer is out there. The medical community is getting closer. All avenues of disease management must be utilized. That includes screening guidelines, testing requirements and the management of side effects.

When being interviewed for the Curetoday article, Rhonda emphasized the importance of data collection. She explained that registries are responsible for generating advances in research. Patients and their caregivers gain a voice and control through active participation.

President Richard Nixon Declared a War on Cancer

Cancer registries have been in existence since 1973 following President Nixon’s declaration of a war on cancer. The first registry to be formed, SEER, is administered by the National Cancer Institute. SEER now collects data from around thirty-five percent of U.S. citizens. Patient registries are the latest addition to the cancer registry community.

As of 1992, every state has been required to maintain a registry. As a result, the Centers for Disease Control created the National Program of Cancer Registries (NPCR) which is now in forty-six states.

SEER and NPCR collect any data that has been reported on cancer patients in every state. The information may come from hospitals, pathology labs or outpatient facilities. Each year the agencies collect new data from over 1.7 million cancer patients. This figure represents one hundred percent of cancer patients being treated in the nation.

Misinformation Still Exists

Some doctors believe that smoking is the only cause of lung cancer. Others are of the opinion that only those aged seventy or older are stricken with lung cancer.

The registries and data show otherwise. These registries distribute accurate data that can be verified. Many lung cancer patients are living longer. Their progress is being tracked and added to the accumulated data. This information gives researchers an opportunity to analyze the effect of their treatment.

Benefits and Limitations

NCPR has benefited by advanced technology that has increased its capacity to send critical information to the registry. Its goal is to standardize reporting and enable various registries to work together.

The National Cancer Database (NCDB) is currently limited to recording initial therapies that treat the early stages of a disease. Therefore critical details covering the later stages of the disease, relapses or additional treatment may not be recorded. There is also the possibility that some registries are not measuring or recording survival or disease-free survival.

NCDB and NPCR collect identical data on patient and tumor characteristics, diagnosis, and various biomarkers (mechanisms to measure disease).

Where they differ is that NCDB concentrates on health trends and patients. Therefore, the data accumulated by each agency is not used for similar research studies.

Data collected by large registries relate mostly to the state, nation or institutions but lack data from the patient point of view.

Patient registries allow the patients to present and document their own personal experience. Researchers are relying on information provided by patients to have a direct impact on breakthrough and outcome.

There are some in the oncology community who point out that the registries may not represent the general population. The data appears to contain a majority of patients sharing characteristics such as levels of higher education and computer access.

Registries and Rare Diseases

The FDA recommends that investigators refer to registries, specifically those targeting rare diseases, in their efforts to locate patients for their clinical trials. These same registries will provide physicians and researchers with data on diseases with otherwise limited information.

Participation in registries is possible through or by checking with a local patient advocacy group relating to a specific type of cancer.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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