Purpose of the Study
The Northwell Health Firefighter Cancer Study is a unique opportunity to find out how many members of the volunteer fire service in New York State have developed or died from cancer. In addition to supporting presumptive cancer legislation to protect volunteer firefighters who develop cancer in the line of duty, this information will be invaluable for the creation of prevention and treatment programs that benefit firefighters.
Cancer presumption allows disability or other compensation for firefighters who develop cancers in the line of duty that are presumed to be caused by exposures resulting from their work as firefighters. Using the same methods as previous research studies, this will be the first study of cancer risk in volunteer firefighters in the U.S. The study will require an unprecedented level of participation and trust from volunteer fire departments throughout New York State.
Study Data Sources
By law, cancer diagnoses and cause of death are recorded in every state. This information is available to researchers who have proven that they are approved to do a research study that requires this information for individuals and 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 and other identifying information for individual volunteer firefighters – active, former, or deceased – to the agencies with cancer and death records.
- These agencies are permitted to report any “matches” of cancer diagnoses and deaths with this list to the study team and won’t do anything further with the list submitted. They do not keep the list, do not contact anyone on the list, and will not use the information for any other purpose.
- The Northwell Health Firefighter Cancer Study team is not asking for any personal health information, such as cancer diagnosis, from fire departments or firefighters; the only health information obtained comes directly from state and federal agencies with cancer and death records.
The Northwell Health Firefighter Cancer Study team is led by Dr. Jacqueline Moline, an occupational medicine physician who is the Chair of the Firemen’s Association of the State of New York’s Health and Wellness Committee and one of the founders of the World Trade Center Health Programs. The Study Director is Dr. Anne Golden, an occupational epidemiologist who was instrumental in obtaining the data for the Fire Department of New York that led to the first cancer presumption bill for career firefighters in New York State.
Partnership with Fire Departments throughout New York State
Each department’s information is crucial to doing the best possible study for all volunteer firefighters in New York State who are so deserving of comprehensive cancer coverage and programs.
Our researchers understand that making the roster of all department members is time-consuming and that releasing any personal information can seem very risky in this day and age. There is absolutely no room for error when protecting firefighters’ private information. The team is obligated by the Ethical Research Board at Northwell Health and at the New York State Department of Health to ensure the confidentiality and privacy of all data we collect. Our team takes this responsibility extremely seriously and have a strong track record of protecting workers and their data.
The Northwell Health Firefighter Cancer Study team will use every data security precaution available, including:
- NOT requesting Social Security Numbers
- Never contacting individual firefighters or their families for any reason
- Using a research data storage system with the highest security protocols (REDCap, see FAQs for further information)
- Only reporting completely de-identified data (no individual firefighters’ or fire departments’ names will ever appear in any report from the study)
- Not using or sharing the data for any other purpose
Participation is only 2 steps:
- Send the study team your preferred email address to receive the link for your fire department’s participation in this study
- Use the link to enter the following information for past and present firefighters who served in your fire department (required*):
- Complete name (last, first, middle initial)*
- Date of birth*
- Current street address, town or city, state, zip code*
- Sex and ethnicity/race*
- Status at fire department (active, inactive, exempt or deceased)*
- Date joined and date exempt/resigned at the fire department (and any gaps in service)*
- Highest rank and position at fire department
- Membership with any other fire department
- Status as a career firefighter
Please contact firstname.lastname@example.org with questions or interest in participation.
- Principal Investigator: Dr. Jacqueline Moline
- Program Director: Dr. Anne Golden
- Project Coordinator: Gina Arena
- Research Assistant: Vincenza Caruso
- Fire Department Liaison: Charles Purcell (EMT/Smithtown Fire Department)