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Privacy Policy

Who we are and what this policy covers

Last updated: October 29, 2026

The Rutgers Genetics Coordinating Center (RUGCC), part of Rutgers, The State University of New Jersey, runs research studies and the websites that support them. This policy explains what information we collect when you visit those websites and how we use it.

It applies to:

  • rutgers.edu
  • Study information and recruitment sites, including kdstudy.org, bcstudy.org, hcstudy.org, studyph.org.
  • Study enrollment portals, including kdstudy.rugcc.org, phstudy.rugcc.org, hcstudy.rugcc.org, bcstudy.rugcc.org
  • Referral links at join.rugcc.org and other *.rugcc.org sub-domains.

It supplements the Rutgers university-wide data privacy statement.

 

Information we collect

We collect two kinds of information: what your browser sends automatically, and what you choose to give us.

Collected automatically when you browse. Our sites use cookies and similar technologies to record:

  • pages viewed, buttons and links clicked, and time on the page
  • the website or ad that sent you, including campaign codes in the link (see Campaign links below)
  • device and browser type, operating system and screen size
  • IP address, and the approximate location (city or region) it indicates

This information does not include your name or contact details.

Information you give us. When you sign up for a study, contact us or subscribe to updates, you may give us your name, email address, phone number and other details the form asks for. Study information is handled as described under Study participation data.

 

Cookies and Google Analytics

We use Google Analytics, managed through Google Tag Manager, to see how visitors find and use our sites, for example how many people view a study page and how many click through to sign up. Google Analytics sets cookies in your browser and sends the browsing information listed above to Google. We look at these reports in aggregate; they do not identify you by name.

Google describes its use of this data in How Google uses information from sites or apps that use our services. You can opt out with the Google Analytics opt-out browser add-on.

 

Advertising and the Meta Pixel

Our study recruitment sites use the Meta Pixel, a tool from Meta Platforms, Inc., the company behind Facebook and Instagram. We and our recruitment partners, such as the National Kidney Foundation, use it to measure how well ads on Facebook and Instagram bring people to our study pages.

The Meta Pixel runs only when you arrive at one of our pages by clicking a Facebook or Instagram ad. If you reach our sites any other way, such as by email, search or a partner link, the Meta Pixel does not run and nothing is sent to Meta.

When it does run, it sends Meta the page you viewed, whether you clicked a sign-up button, your IP address, browser details and Meta cookie identifiers. Meta may link this to your Facebook or Instagram account and use it to measure and deliver ads, as described in Meta’s Privacy Policy.

We limit what the Meta Pixel receives:

  • It runs only on our public information pages, not in study enrollment portals or participant accounts.
  • We have turned off Meta’s automatic features that scan pages for contact details or record other activity, so Meta receives only the two events described above.
  • We do not send Meta your name, email address, phone number or any answers you give in study forms.
  • We do not send Meta any information about whether you enrolled in a study or about your health.

You can control how Meta uses this information in Meta’s ad preferences.

 

Campaign links and enrollment attribution

Links in our ads, emails, newsletters, partner materials and referral tools often include short codes, such as utm_source and utm_campaign, that identify where the link was shared. When you go from one of our information pages to a study enrollment portal, we pass these codes along, together with the page you came from.

If you sign up, these codes are stored with your enrollment record so we can tell which outreach worked, for example which partner, newsletter or ad campaign led to sign-ups. Only the study team uses them, for that purpose, and they are not shared with advertising platforms.

 

Study participation data

Information you provide when you enroll in or take part in a study, including health information and samples, is collected and protected as described in that study’s informed consent and other IRB-approved study documents. Those documents, not this website policy, govern how study data is used and shared. If this policy and your study consent differ, the consent applies.

 

How we share information

We do not sell, rent or share information that identifies you, such as your name, email address, phone number or study information, with advertisers or other third parties.

We do use a few third-party services to run our sites:

Analytics and ad measurement tools (Google Analytics and the Meta Pixel) collect technical information, such as IP address, browser details and cookie identifiers, directly from your browser when you visit, as described above. We do not give these services your name, contact details or study information.

Website and form providers (such as Landingi, and tally.so, which hosts our recruitment landing pages and feedback forms) store what you type into a form on our sites, such as your name and email address, on our behalf. They handle it only to provide that service to us.

We share results with our recruitment partners only as totals, such as page visits and sign-up counts by campaign, with no names or contact details.

We may also disclose information when required by law, subpoena or other legal process, or as required under New Jersey public records law.

Global Privacy Control. If your browser sends a Global Privacy Control signal, the Meta Pixel does not run when you visit our sites.

 

Your choices

 

Children, changes and contact

Children. Our sites are intended for adults. We do not knowingly collect information through our websites from children under 13.

Changes. We may update this policy. The “Last updated” date at the top shows when it last changed.

Contact. Questions about this policy or our sites: tara_matise@rugcc.org.