Why is this study being done? What are the benefits of participating?
The purpose of the study is to find out whether the exposures to known carcinogens faced by volunteer firefighters lead to higher rates of cancer than the general public. The data we collect from our study will provide invaluable knowledge about the cancers that firefighters are most at risk for developing. Once completed, the study will enable the medical community to design effective cancer prevention and treatment programs that target these cancers and develop screening programs that save lives through early detection and treatment.
Data security: Will our department’s information be safe?
Yes. Information from fire departments will be collected by a secure web-based application called REDCap (Research Electronic Data Capture) and will be stored on secure Northwell Health servers. REDCap is a HIPAA compliant website used by many universities and hospitals to protect research information. Only the members of the Firefighter Cancer Study team have been granted access to the information sent through REDCap. We will take every precaution to keep the information as secure as possible.
Why won’t individual firefighters be contacted? Why can’t each individual firefighter complete the data collection form?
Fire departments or districts are being asked to collect the information on behalf of their firefighters and send it to the Firefighter Cancer Study team because the study team needs the information for inactive, exempt and deceased members, in addition to the active members. Therefore, the study team will not have any direct contact with individual firefighters or their families. No individual or fire department will be asked for personal health information, such as which firefighters had cancer or died. The study team needs to get that information directly from agencies that have complete and accurate information about cancer diagnoses (see below).
How will the study find out which firefighters had cancer?
Cancer diagnoses for individual firefighters will be obtained directly from the NYS Cancer Registry. The NYS Cancer Registry will match the names and other information provided to identify which members had cancer. Your fire department does not need to indicate any cancer diagnoses or any other medical information, only the demographic information we request.
What is the NYS Cancer Registry?
By law, cancer diagnoses are recorded in every state health department. This information is available to researchers who have proven (1) that they are approved to do a research study that requires this information for individuals and (2) that they can protect the confidentiality and privacy of individuals’ identities and health information. The Northwell Health Firefighter Cancer Study team is authorized to submit a list of names, dates of birth and addresses we receive from departments to the NYS Cancer Registry, which is permitted to report any “matches” of cancer diagnoses to the study team. They do not keep the list, do not contact anyone on the list, and will not use the information for any other purpose.
Are you asking for our members’ Social Security numbers?
No. We will not ask for Social Security numbers.
What information is our department required to send?
Your department will be asked to enter the following information in the data collection forms in REDCap:
- Department information—general information about your department
- Personnel information files—basic demographic information for all past (inactive, exempt and deceased) and present members of your fire department
How will we send the study team our fire department’s information?
If you agree to participate in this study, your department will be asked to select a department representative to gather the data and complete the data collection form on behalf of the whole department. There are 3 options available for sending department data:
- Online data collection form: Enter fire department information form and upload personnel information files using a secure, HIPPA-compliant website called REDCap.
- Paper data collection form: Fill in a paper form and mail (or fax) it to us along with paper copies of your department’s personnel information.
- Combination: Use the online data collection form to enter fire department information and then mail or fax paper copies of the personnel information.
The department representative will need to provide the study team with an email address or mailing address to receive the online link or the paper data collection form. The study team’s goal is to provide the easiest way for your department to participate in this study. Please contact the team if these options don’t work for your department and they will be happy to work with you to find alternatives.
What types of files with our department’s information can we upload?
You can upload any type of file* you have. If possible, please include all your information in a single file; however, you are able to upload up to five files on the data collection form. If you have more than five files, please contact Gina or Vincenza (see below for contact information).
* We can provide step-by-step instructions for downloading your files for some of the common personnel tracking/records management software systems upon request.
Do we need to submit all the information at one time?
You can save the forms with the information you’ve entered at any time and return later. You will receive an access code to use when you return to the forms. Please save a copy of the code. If you lose the code, contact the project coordinator, [email protected], to retrieve it. You may hit “save & return later” as many times as necessary; however, once you hit “submit” for a survey, you will no longer be able to return to it. Therefore, please make sure you’ve completed everything before you hit submit.
What if we can’t provide all the requested information?
Some of the information is required because it ensures the best match to the NYS Cancer Registry; the data collection form shows which information is required. However, the study team can work with any amount of information you can provide. The more information you provide, the more data the study team will have to conduct a proper research study.
How many years should we go back? Which rosters do we need to submit?
The further back in time you can provide rosters, the better for the study. If you can, please submit the information for every active, inactive, exempt and deceased firefighter who served in your department, starting with the current roster and working back as far as possible. The study team recognizes the difficulty of this request and will therefore work with any amount of information from your rosters you can provide.
Who will have access to the information we provide?
The members of the Firefighter Cancer Study team will be the only people with access to the information you provide. The information will be stored on secure Northwell Health servers for the study period. There are strict limits on how we can use your information; these limits are enforced by the boards that oversee research at Northwell Health and at the New York State Department of Health. The study team is obligated to keep the information safe and only use it for the purposes of this study. The information will not be shared with FASNY and will not be used for solicitation or any other purpose.
What are the risks of participating in this study for firefighters?
There is a risk of loss of confidentiality of the information collected for this study; while this risk is possible, our highest priority is keeping firefighters’ information safe. Northwell Health provides research information technology (IT) procedures and training to ensure that the study team does everything it can to keep the information secure, including password protections and log-in restrictions to files and Northwell Health computers. Representatives from Northwell Health’s Human Research Protection Program (a group of people who oversee research at Northwell Health) will make sure this study is being done properly.
What are the risks of our department sending information on behalf of our members?
Please consult with your fire district manager or attorney about New York laws governing the release of personnel information that may affect your department.
Will we get results about our fire department?
You will not receive results about your specific fire department. The study may report cancer rates among firefighters by county, but not for individual municipalities or fire departments.
Who do we contact if we have questions?
You can contact any member of the research team with any questions or concerns you have by emailing [email protected].
For questions regarding participation and completing the data collection forms, contact:
- Project Coordinator, Gina Arena, at (516) 465-1944 or email [email protected]
- Research Assistant, Vincenza Caruso, at (516) 465-3196 or email [email protected]
If you have a research-related question or concern, contact:
- Principal Investigator, Dr. Jacqueline Moline, at (516) 465-2639 or email [email protected]
- Program Director, Dr. Anne Golden, at (516) 465-3171 or email [email protected]
For questions regarding protection of research participants or other concerns about this study (refer to Northwell Study ID #16-848), contact:
- Human Research Protection Program at Northwell Health at (516) 465-1910