Confidentiality of Information

Program Records

All data collection and testing for the FMMP was done maintaining strict confidentiality and security of the information.  Participants were assigned an ID number and the ID was used (rather than name) on all forms and test results when feasible. On January 13, 2010, Judge Spiegel approved a custodial agreement between the class of community residents and the University of Cincinnati to maintain the FMMP records and develop the FMMP data and biospecimens into a national resource for studies of uranium and radiation exposure, and other medical studies such as those which will identify biomarkers of high risk of cancer or other diseases. 

• All paper records (charts), radiographic films (x-rays) and mammogram films are stored in a secure space at the UC Reading Campus.
• Biospecimen are in freezers in a monitored research freezer storage area of The Cincinnati Childrens’ Hospital Medical Center.
• Information about the examinations or from the questionnaire is not given to any party other than the participant or their physician, and only if the participant signs a form requesting that results be sent to the physician.  We never provide information to insurance companies.  Participants were sent copies of all their examination and test results after their examination.

Computer Database

• The test data, questionnaire responses and examination findings were entered into a computer database, but only the ID number was used to enter the data for confidentiality.  The link between ID number and name is kept in a separate, secure portion of the database.
• The computer system is housed on a secure server within the University of Cincinnati with limited access to the database.
• The entire computer system is password protected.
• Data used for studies is distributed to researchers with a RID (research ID) and the link remains with the FCC.

Scientific data or medical information may be analyzed and presented at scientific meetings or in professional journals so that the research findings from the Fernald Community Cohort may be useful to others.  However, presentation of results will not include names or other identifying  information which may compromise the right to privacy.  Every reasonable effort shall be made to ensure anonymity.