The AUBMC cancer registry is an information system designed for the collection, management and analysis of data on patients with diagnosis of a malignant or neoplastic disease (cancer). Cancer registration is a global method to report cancer incidence, the types of cancer that occur (site and morphology) and demographic information.
The Data management collects data on diagnostic findings, treatment and follow-up in the Oncology Cancer data base using the recently developed E-forms that adopted a modified version of the latest American Society of Clinical Oncology (ASCO) cancer-specific forms.
The clinical research unit manages current cancer research at the Naef K. Basile Cancer Institute and ongoing clinical trials.
History
Upon his return from Memorial Sloan Kettering Cancer Center (MSKCC) in 1970, Dr. Kamal Bikhazi and Elizabeth Morton (pathologist) worked as volunteers to initiate a tumor registry and a cancer program. In 1971, Dr. Philip Salem was appointed as tumor registry- cancer program director. In 1973, the first automated system was introduced at AUB, and an ambitious attempt to establish a national cancer registry with the ministry of public health was made. The tumor registry was reactivated by the great efforts of Dr. Ghaleb Saab from 1983 till 1986. From 1987 till today, the tumor registry was headed respectively by Drs. Ziad Salem (1987-1990), Dr. Philippe Issa (1990-1998) and Dr. Ali Shamseddine (1998- present).
The Data management and clinical research unit in Naef K. Basile, directed by Dr. Ali Shamseddine, initiated in 2013 as a new unit including the Tumor registry, the data management and clinical research unit. With the increasing volume of patients treated and diagnosed with cancer over the past decade, founding this unit was essential to build a prospective and comprehensive database along with a research unit. The three components complementarily aim at expanding research quality and management.
Mission
In the Naef K. Basile Cancer Institute (NKBCI) Data management and clinical research unit, we aim at supporting research, analysis and data management. Our team is still expanding since the opening of the institute and it includes health practitioners, nurses, doctors, and researchers.
Through our unit we are aiming:
- Improve on cancer research through emphasizing on clinical trials, translational research and the rapid uptake of new evidence into practice.
- Improve on the cancer data base, cancer registry and the data quality by implementing a new prospective data collection program.
Other Functions
- Oversee the activities of the Tumor registry
- Maintain a quality-of-care evaluation with documentation of its operation
- Conduct research analysis in the clinical research unit.
Data Management
Cancer registry
The cancer registry’s is an essential part of the data management in our unit. Its primary function is to maintain a registry of all cancer cases visiting AUBMC. Clinical and pathological characteristics of cancer patients are collected continuously and systematically from various data sources and stored in the cancer registry database.
The registry analyzes and interprets data periodically and provides information on the incidence and characteristics of specific cancers in various segments of the resident population and on temporal variations in incidence. Such information is the primary resource not only for epidemiological research on cancer determinants, but also for planning and evaluating health services for the prevention, diagnosis and treatment of the disease.
Epidemiological research, based on comprehensive cancer registration, remains the most valid and efficient way to plan and evaluate all aspects of cancer control. Cancer registries have an important supportive role in the care of cancer patients by assisting clinicians in the follow-up of their cases and by providing statistical data on the results of therapy. The cancer registry in AUBMC currently collects data from pathology, radiation oncology, and hematology and dermatology departments. The data management department uses this data to generate annual reports that are discussed in the hospital committee on cancer, and are published on the Data management and clinical research unit. Moreover, the cancer registry plays an essential role in retrospective data collection from medical records, and doctors’ clinics.
The items of data recommended for registration have been kept to a minimum, with emphasis on the quality rather than the volume of information; these may be expanded, if necessary, to suit local needs. Our hope is that our hospital-based cancer registries, which are more concerned with the care of patients, clinical research and hospital administration, may serve as the nucleus for the later development of population-based registration in our country. Work on a national tumor registry has started since 2002. In 2005 the coalition of LSMO, Lebanese society of pathology, Lebanese cancer society, and other medical societies was planned to gather data. The first national registry report was done for the year 2003, covering more than 90% of the cancer incidence in Lebanon in that year. Data were retrieved from independent and hospital-based pathology / hematology labs, and hospital based registries.
Most of the cancer registries now in operation, and whose data are published in the IARC series Cancer Incidence in Five Continents, are in Europe and North America. The data collected by individual registries may vary according to local needs and availability of information, but the nomenclature and definition of each item should be the same in all registries to facilitate international comparability of cancer data.
Our registry at AUBMC conforms to the norms set by the International Agency for Research on Cancer and the International Association of Cancer Registries which aims to provide guidelines on all aspects of cancer registration (IARC Scientific Publications No. 21). The importance of cancer registration in planning and evaluating cancer-related health services is dealt with in greater detail in the IARC monograph The Role of the Registry in Cancer Control (IARC Scientific Publications No. 66).
The Data Management plans
The Cancer registry in AUBMC currently collects the following data: Name (Initials), Date of birth, Sex, disease site, disease histology, metastasis site, date of diagnosis, attending physician. In order to follow the most recent registry programs, the Cancer registry is in the process of adopting the CanReg5 program software by the International Agency for Research on Cancer (IARC). This software was introduced in 2012 is used by the Lebanese Ministry of Health and in at least 48 other countries.
The oncology database launched in October 2014 initially included three cancer sites: Breast, colon and prostate, a year later, lung cancer was introduced. Using the E-forms, the Data Management has expanded the current cancer data quality by prospectively collecting detailed data upon patient admission. Data collected included demographics, consents, pathology and blood tests, treatment, surgical procedure, imaging, therapies, medication, in addition to follow up and outcome. This method of data collection is stored on an online internal system to secure a comprehensive database. Unlike the tumor registry this database includes treatment details, and constant updates on patients’ therapy upon each visit. As patients will be pre-consented upon their admission, subsequent follow ups will be made possible through contacting the patients and retrieving outcome information. The coming plan is to include non-solid tumors that cover hematologic and lymphatic tumors to the oncology database.
Clinical research unit
In the Clinical research unit, studies are allocated to research fellows including clinical trials; Phase I (planned), Phase II /III studies, prospective and retrospective analysis. The Clinical Research Unit includes current projects, publications, data collection, data analysis and patients consents. Ongoing research in the clinical research unit includes an array of Hematology- Oncology related topics. A full list of current research is available in the ongoing research section.
Data Management and Clinical Research Unit Staff