Are my data safe?


All data from the Environmental Health Study for Western New York are kept strictly confidential.  This includes any data we collect from you from questionnaire responses, biological samples (urine, saliva, blood, etc.), laboratory measures like blood pressure, height or weight, your address, your name, and contact information.  We will never sell, distribute, or lend our participant list to anyone.  We will create a study ID for you when you enroll in the study to make sure that your name is never connected directly to the data you give to us.  Any study results will only be presented in a summary format so that no one will be able to link your answers to you.

Our study is also covered by a Certificate of Confidentiality from the National Institutes of Health. The researchers with this Certificate may not disclose or use information, documents, or biospecimens that may identify you in any federal, state, or local civil, criminal, administrative, legislative, or other action, suit, or proceeding, or be used as evidence, for example, if there is a court subpoena, unless you have consented for this use. Information, documents, or biospecimens protected by this Certificate cannot be disclosed to anyone else who is not connected with the research except, if there is a federal, state, or local law that requires disclosure (such as to report child abuse or communicable diseases but not for federal, state, or local civil, criminal, administrative, legislative, or other proceedings, see below); if you have consented to the disclosure, including for your medical treatment; or if it is used for other scientific research, as allowed by federal regulations protecting research subjects.   

The Certificate cannot be used to refuse a request for information from personnel of the United States federal or state government agency sponsoring the project that is needed for auditing or program evaluation by The US District Court for Western District of New York, which is funding this project.  You should understand that a Certificate of Confidentiality does not prevent you from voluntarily releasing information about yourself or your involvement in this research. If you want your research information released to an insurer, medical care provider, or any other person not connected with the research, you must provide written consent to allow the researchers to release it.

Data Security

Our study website is developed and maintained by the University at Buffalo's Center for Unified Biometrics and Sensors (CUBS).  The website is loaded on an encrypted connection via HTTPS and has an SSL certificate that verified the identity of '' (you can see by clicking on the lock icon in the address bar).

We contracted with SurveyGizmo to house our online questionnaire. They have several privacy policies in place, including anti-hacking measures, firewalls, and security scans.  A complete overview of the their security features is available here: questionnaire security

All paper questionnaires are stored in locked offices, in locked filing cabinets.  All contact information, on the last page of the questionnaire, is separated from your responses to the questionnaire and stored in a separate, locked location.

What else should I know?

Participating in this research study is voluntary and you can skip any question or stop participating at any time.  The risk of breach of confidentiality for participating in this study is very small.  There are no direct benefits to you, but there are benefits at the community level to gain a better understanding of how current and historical exposures to environmental pollutants impact the health of your community, both now and over the next several years.

There are compensation measures built into our study for your participation and these will vary by which questionnaire, modules, or visits you choose to complete.

If you have any questions regarding your rights as a participant and would like to contact someone outside of the study team, we encourage you to reach out to the University at Buffalo Institutional Review Board, 716-888-4888 or This email address is being protected from spambots. You need JavaScript enabled to view it..

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