Frequently Asked Questions About the Multi-site PFAS Health Study

The Multi-site PFAS Health Study includes people from the Hoosick Falls Area and the City of Newburgh. Researchers will look closely at the role PFAS may play in various health outcomes by analyzing results from blood tests, health-related lab tests, and medical and exposure histories. This study is funded by the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry. New York’s effort is led by researchers from the New York State Department of Health and the University at Albany. Additional Multi-site PFAS Health Study communities are located in California, Colorado, Massachusetts, Michigan, New Jersey, and Pennsylvania.

Adults (who did not work or train as a firefighter or in an industry that used PFAS chemicals in manufacturing) and children who lived Hoosick Falls Area and the City of Newburgh between 2005 and 2016 may be eligible to participate. If you are interested, call 833-732-7697, text 518-898-0276 or email pfas@albany.edu.

General Questions

What is PFAS?

Image showing products containing PFAS including furniture, water repellent clothing, furniture, paint and varnish, heat-resistent cookware, pesticides, insulation, food packaging and adhesivesPer-and polyfluoroalkyl substances (PFAS) are a group of chemicals that are common in the environment. People can be exposed to PFAS through air, water or soil contaminated from fire-fighting foam, industrial sources, food, and PFAS-containing consumer products. Some of these compounds remain in the environment and in the human body for many years, but levels go down once exposures have ended. PFAS has also been detected in public drinking water supplies and in private wells near where these chemicals were manufactured, used, or disposed of in New York State and the U.S. Learn more about PFAS.

This is the national first study to explore relationships between PFAS and human health effects including:

  • Increased cholesterol levels
  • Changes in liver enzymes
  • Decreased vaccine response in children
  • Behavioral and developmental outcomes in children
  • Increased risk of high blood pressure or preeclampsia in pregnant women
  • Small decreases in infant birth weights

What we learn by working with other researchers nationwide will benefit all communities across New York State and the U.S. Researchers will look closely at the role PFAS may play in various health outcomes by analyzing results from blood tests, health-related laboratory tests and assessments, medical, exposure histories and children’s educational records. Researchers will also collect information about cancers, but the size of the study is not large enough to effectively evaluate the relationship between PFAS exposure and cancer.

The purpose of this study is to learn more about PFAS levels and health effects in study participants from across the United States. Participants will be asked to complete a health clinic visit that includes health evaluations along with blood testing to explore if PFAS could be related to health outcomes. Data collected will be combined with those from other participants in California, Colorado, Massachusetts, Michigan, New Jersey, and Pennsylvania to create a larger study population. Other NYS Department of Health blood testing programs in the Newburgh and Hoosick Falls Area have focused on measuring PFAS levels in participants related to drinking water with PFOA or PFOS contamination.

People who lived in the Hoosick Falls Area and the City of Newburgh between 2005 and 2016 may be eligible to participate. People who are eligible include:

  • Adults, 18 years or older, who received an invitation packet and who:
    • Lived in Newburgh or the Hoosick Falls Area and used drinking water with documented PFAS contamination between 2005 and 2016 in these communities
    • Never worked or trained as a firefighter or volunteer firefighter
    • Never worked at an industrial facility that used PFAS chemicals in the manufacturing process.
  • Children, ages 4 through 17 years with a parent or guardian's permission, who received an invitation packet and who:
    • Lived in Newburgh or the Hoosick Falls Area and drank local water between 2005 and 2016; or
    • Were born to or breastfed by a mother who meets the adult eligibility criteria described above.

If you are interested in participating, call 833-732-7697, text 518-898-0276 or email pfas@albany.edu.

 

Yes. Participants may be eligible to take part in the study as an adult or as a family member. Families may also enroll one or more child to participate.

No. You do not need to be a United States citizen to participate. If you speak a language other than English, we can provide a translation for you.

Participants will be scheduled for a health clinic visit where trained health professionals will:

  • Collect and test blood and urine samples
  • Take body measurements
  • Ask about your medical and exposure history
  • Conduct a behavioral assessment of child participants.
  • Ask permission to access previous blood testing information and medical records as well as educational records for child participants.

Blood and urine will be tested for PFAS levels and health markers such as cholesterol, immune system, kidney, liver, and thyroid function. We will ask about some diseases like diabetes and cancer via a health questionnaire which is typically done over the phone but can be completed at the clinic. We will also explore if certain metals combined with PFAS exposure are related to developmental outcomes in children and neurological outcomes in adults. Everyone who participates in the Multi-site PFAS Health Study will be included in this effort. We may also ask permission to access newborn screening samples already on file with New York State to test them for PFAS exposure. More information about measuring PFAS in newborn dried blood spots.

We are required to have a signed consent before we measure the levels of the chemicals in blood and urine, collect your health data or access your records. Participants may be asked to sign and return multiple consent forms.

Yes. Confidential, individual test results will be shared with participants when results are available along with letters to help them interpret the information.

Information collected will be used to prepare group-level reports that compare exposures and health outcomes within these communities and with those of other areas being studied. Participants will not be able to be identified in any presentations, reports or articles made public.

The Multi-site PFAS Study is paid for by the Agency for Toxic Substances and Disease Registry at no cost to participants. Those who choose to participate will receive their individual test results and reports. In addition, participants will earn a gift card for each study element they complete.

Yes. Participants may choose the parts of the study that they wish to complete.

Yes. Participants may stop taking part in the entire study or parts of the study any time by notifying study staff.

Please call the New York State Multi-site PFAS Health Study investigators toll-free at 833-732-7697. You may also reach study staff by email at PFAS@albany.edu, or by text at 518-898-0276.

Participant Questions

If you are eligible, we will schedule your health clinic visit. You will also receive an appointment information packet in the mail with instructions and directions to the health clinic. Our staff will call you to remind you about your appointment one or two days before your appointment.

With your permission, our trained professional health clinic staff will be prepared to complete the following for each adult and child participant:

  • Measure height, weight, waist, hip, and blood pressure.
  • Receive your urine sample that was collected that morning.
  • Collect a fasting blood sample from a vein in your arm.
  • Complete a health questionnaire about your exposure and medical history prior to your visit. Questionnaires are typically done over the phone but can be completed at the clinic. Families will be asked to complete a questionnaire for each child.
  • If you are a parent or guardian, we will also ask you to complete an assessment of your participating child’s attention and behavior.
  • Conduct a behavioral assessment for each child. These tests should not be tiring for your child.
  • We will ask your permission to collect an additional blood sample from a vein in your arm. This is in order to look at how certain metals combined with PFAS exposure may be related to certain health outcomes.
  • If you participated in a previous New York State Department of Health PFAS blood testing program, we will ask for your consent to access your previous blood testing information and to use any leftover sample for additional analyses.
  • For adults and children, prior to your clinic visit we will ask about your health, your drinking water, your family health history, and your job/school history.This is typically done over the phone but can be completed at the clinic.
  • For adults only, we will ask about health behaviors such as use of alcohol and tobacco.
  • If you do not know. do not remember an answer to or do not want to answer any of the questions asked, you can simply say so.

Participants can expect the health questionnaire portion (via phone interview) to take roughly 45 minutes to complete. The questionnaire may take a little longer if you are completing a questionnaire for a child. The clinic visit typically takes an hour per participant to complete. Families may schedule a second visit to complete their clinic visit.

Yes, it is preferred to conduct the questionnaire by phone to help cut down on your time at the clinic. However, if a participant prefers to complete the questionnaire in person, we can accommodate them

No. It is important that we collect this information from adult participants directly. For child participants, parents or guardians will be asked to complete these questions for each child.

If needed, a household member may assist you during the interview. Language interpreters will also be available for participants wishing to complete the interview in a language other than English.

  • For Newburgh participants, the health clinic is located at 327 Fullerton Road.
  • For Hoosick Falls Area participants, the clinic is located at 140 Main Street

For those who request it, local transportation may be available for participants in the Newburgh area.

Please follow these instructions for adult and child participants.

We will test your blood for various PFAS chemicals along with metals (such as leadmercury, and cadmium levels). We will also test your blood for health markers like cholesterol, liver enzymes, kidney function, sex, and thyroid hormones. These markers will help us learn more about how PFAS affect health. These are common markers used by health care providers to assess health.

Your urine sample will be stored and may be used later as part of this research study.

Individual test results will be provided back to you as they are available. You will receive these results along with letters to help you interpret your results and to contact us with any questions. Individual test results will only be shared with participants. However, participants may choose to share and discuss their results with their health care providers.

Your personal information is protected by New York State and Federal laws. This research is covered under a Certificate of Confidentiality, which means your identity cannot be revealed without your consent. All personal information collected as part of this study will be kept private and secure:

  • A unique participant ID will conceal (de-identify) each participant’s identity, using a code number instead of their name for all study information and test results
  • All personal information will be locked in a secure study office and maintained on a password-protected network with restricted access only to those study staff who are trained to protect privacy and who need access that information for study purposes
  • No personal, identifiable information will be shared. Only de-identified information will share with other scientists using the assigned participant IDs.

As mandated by the New York State Public Health Law, all measured levels of lead and elevated levels of mercury, and cadmium above certain limits are reportable to the New York State Department of Health Heavy Metals Registry. All information reported to the registry is kept confidential.