Office of Regulatory Research Compliance
The Rosemary Williams Cancer Registry
Office of Regulatory Research Compliance
Howard University
HU Research Bldg 1
1840 7th Street, NW
Suite 309
Washington, D.C. 20001
Phone: (202) 865-8597
Fax: (202) 232-5286
ORRC is located directly across from the Howard University Shaw Metro on 7th Seventh St.(Georgia Ave) on the third floor of the Howard University Research Building-1.
ABOUT THE ROSEMARY WILLIAMS CANCER REGISTRY
The unique aspect of Howard University Cancer Center (HUCC) is our natural ability and strength to address cancer disparities with an emphasis on those cancers that disproportionately impact African-Americans, in particular. There are three overarching programmatic areas in the Cancer Center: (1) cancer biology; (2) cancer etiology; and (3) cancer prevention, control, and population sciences; whereby cancer disparities represent the underlying theme of the research focus.
HUCC has had a long history of serving minorities and underserved populations and addressing disparities. Thus, the mission of HUCC is to reduce the burden of cancer through research, education, and service, with emphasis on the unique ethnic and cultural aspects of minority and underserved populations.
The Rosemary Williams Cancer Registry of the the HUCC data contributes to the existing knowledge regarding the burden of cancer and is used to implement and evaluate cancer control programs. Data from the Rosemary Williams Cancer Registry can also be used for cancer research.
The Rosemary Williams Cancer Registry takes very seriously the sensitive nature of the data held in the registry and has established procedures designed to enable research while maintaining assurances of confidentiality. In addition, HUCCR recognizes that complex data elements, such as those involving cancer diagnosis and treatment, require an expert level of technical expertise to interpret. Therefore, sensitive and confidential data will be released only after assurances are obtained that the data will be analyzed in an epidemiologically competent manner. Epidemiological competence includes, but is not limited to, the researchers' awareness and understanding of the effects of bias that can occur during the processes of data collection, classification and coding, and statistical analysis.
Investigators who wish to use registry data for research purposes must complete the appropriate application for review by the HU IRB. Each application is reviewed on the basis of the appropriateness and merit of the research question of interest as well as the feasibility of the proposed study. All applications must include assurances that the data will only be used for the purposes of the research described in the application. Additional assurances are required that are specific to the level of data requested and include, but are not limited to, secure storage of confidential data, destruction of data upon project completion, and provision of information regarding staff that will have access to the data. Requests require approval from the HU IRB and data access will be granted for only that data which is approved. Approvals will expire after one year but can be renewed.
TYPES OF DATA
The Rosemary Williams Cancer Registry recognizes four categories, levels, or types of data that can be released for cancer surveillance and research purposes. Please contact Alfreda Woods, BS,CHES,CTR, Manager of the Rosemary Williams Cancer Registry for more information on the various types of data items available at 202-865-4613. The four levels/categories are:
1. Reports of aggregate data stratified by non-confidential data fields (i.e. case counts by race, sex,
county, etc.).
2. Data files containing individual, record-level data with no personal identifiers. The files will not
contain name, street address, phone number, social security number, date of birth, any reporting
facility or physicians involved in the patient's care. The files may contain zip code and county of
residence.
3. Data files containing individual, record-level data with personal identifiers, to be used for purposes of
record linkage, either electronic or manual, but not direct patient contact. Once the record linkage is
complete, the personal identifiers will be removed from the data set.
4. Files containing individual, record-level data with personal identifiers, to be used for research
purposes involving direct patient or family contact.
Non-Confidential Data Items
Patient Demographic Data
•Sex •Race •Ethnicity
•Tobacco Use •Cigarette Pack Years • Number of Live Births
•Number of Primaries •Age at Diagnosis •Vital Status
•Cause of Death •Diagnosis State •Diagnosis Zip
•County at Diagnosis •Area Development District
Case Specific Information
•Site Code •Date of Diagnosis •Family History of this Cancer
•Menopausal Status •Class of Case •Primary Payer
•Class of Case •Primary Payer •Class of Case
•ICD-0 Version •Topography•Histology •Behavior Code
•Tumor Grade •Tumor Marker 1 •Tumor Marker 2
•Laterality •Diagnostic Confirmation Code •Tumor Size
•Regional Nodes Positive •Regional Nodes Examined •Sites of Metastases
•Summary Stage •TNM Best Stage
Other Primaries
•Case Sequence Number
Therapy Data
•Treatment Composite - First Course (i.e. initial treatment at the time of diagnosis)
•Treatment Composite - All treatments including first course and treatments received at recurrence.
Follow Up Information
•Recurrence (date/type)
•Cancer Status (i.e. active vs. no disease)
•Date of Last Contact
•Vital Status
HOW TO REQUEST DATA
Investigators who wish to use registry data for research purposes must complete the appropriate application for review by the IRB, including description of the proposed study and justification of the necessity of such research, assurances of upholding confidentiality, and for levels two through four data, documentation of approval by the IRB. A Pre-Screening Interview Form must be submitted with your application. A consultation must first be held with the Registry Manager to complete the Pre-Screening Interview Form and to determine the available data pertinent to your study. The form must be signed by the Registry Manager and attached with your application.
SUBMIT AN APPLICATION
Applications for requesting data can be submitted to the IRB via electronic submission below by clicking on the "Submit" button or in-person by walking into the Office of Regulatory Research Compliance (ORRC) located at 1840 7th Street NW, Suite 309, across from the Howard University/Shaw Metro.
