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Frontline Research Partners — Privacy Policy

Effective date: May 1, 2026 Program: Frontline Research Partners, an initiative of the Rutgers University Study of the Genetics of Kidney Disease Operated by: Rutgers University Genetics Coordinating Center (RUGCC)

 

What This Policy Covers

This policy supplements the Rutgers University Genetics Coordinating Center Privacy Policy and applies specifically to clinicians enrolling in the Frontline Research Partners program. Where this policy and the RUGCC policy conflict, this policy governs for partner program participants.

This policy describes what information we collect from clinicians who enroll in the Frontline Research Partners program, how we use it, how we protect it, and your rights regarding it.

This policy does NOT cover patient data. The Frontline Research Partners program does not collect, receive, transmit, or process patient health information (PHI) of any kind. Patient enrollment in the study is governed by the study’s own consent form and privacy practices through kdstudy.rugcc.org.

 

What We Collect

When you enroll, we collect:

  • Identity information: first name, last name, professional role, enrollment type (practice or individual)
  • Practice information: practice or organization name (if applicable), city, state, ZIP code
  • Contact information: work email address, main phone line, direct phone line and extension (if provided)
  • Professional registration: NPI number (if provided). We also retrieve publicly available information from the NPPES registry associated with your NPI, including practice address, practice phone, and taxonomy classification.
  • Shipping address: if you provide one for the Founding Partner welcome kit or material reorders
  • Program activity: login timestamps, material downloads, kit requests, profile page views

 

What We Do NOT Collect
  • Patient names, records, diagnoses, or any PHI
  • Social Security numbers
  • Financial or billing information
  • Personal health information about you as an individual

 

How We Use Your Information

 

Phone Number Commitment

We will not call, text, or market to your phone numbers. Your main line and direct line are collected solely for verification and shipping purposes.

You may opt in to SMS or phone communications in the future through your partner dashboard. Opting in is entirely voluntary, will never be a condition of participation, and can be reversed at any time.

We will never sell, rent, lease, or share your phone numbers with any third party for any purpose.

 

Who Has Access to Your Information
  • RUGCC program team: the staff operating the Frontline Research Partners program. This is a small team (currently <5 people).
  • Brevo (Sendinblue): our email and contact management platform, where your partner record is stored. Brevo’s privacy policy governs their handling of data on their infrastructure.
  • NKF — aggregate data (default): NKF receives aggregate, de-identified program metrics (e.g., “47 partners enrolled,” “12 practices in New Jersey”). NKF does NOT receive your individual contact information by default.
  • NKF — individual data (opt-in only): During or after enrollment, you may opt in to share your name, email, role, and practice information with NKF so they can include you in their professional network communications. This is optional, clearly labeled, and reversible at any time. Opting in does not change your program participation.

 

Program Transfer or Co-Operation

The Frontline Research Partners program is operated by RUGCC in collaboration with NKF. If program operations are transferred to NKF or another institutional partner, or if NKF assumes a co-operating role, your partner data (name, email, role, practice information, practice code, program activity) may be transferred to the new or co-operating entity to ensure continuity of the program. In this event:

  • You will be notified by email at least 30 days before any transfer
  • The receiving entity will be bound by privacy protections at least as protective as this policy
  • You will have the option to withdraw from the program before the transfer takes effect and have your data deleted
  • Your phone numbers will NOT transfer unless you separately consent at the time of transfer

 

Public Information

If you are a Verified Research Partner, the following may appear publicly:

  • Directory listing: practice name (or your name if enrolling as an individual), city, state, and role — displayed on the program website
  • Annual rankings: practice name or individual name and attributed enrollment count — displayed on the program website during the annual recognition period
  • Public partner profile page: practice name or individual name + “is a Frontline Research Partner” — at a URL you can share

You may request removal of your directory listing or public profile at any time by emailing partners@kdstudy.org.

 

Data Retention

Your partner record is retained for the duration of your participation and for 2 years after you stop participating (to support historical reporting and any resumption of participation). After that, your record is deleted or fully anonymized.

Program activity data (logins, downloads) is retained in aggregate form indefinitely for program analytics. Individual-level activity data is deleted when your partner record is deleted.

 

Your Rights

You may at any time:

  • Request a copy of all information we hold about you
  • Correct any inaccurate information by emailing partners@kdstudy.org or updating it in your dashboard
  • Request deletion of your partner record. We will delete your contact information, retire your practice code, remove your directory listing and public profile, and confirm deletion within 14 days. De-identified aggregate data (e.g., enrollment counts attributed to your former code) is retained.
  • Stop participating by emailing partners@kdstudy.org or using the unsubscribe link on any program email. Your code is retired and your listing is removed within 7 days.
  • Opt out of any future communications category (program updates, quarterly reports) while remaining an enrolled partner

 

Data Security

Partner records are stored in Brevo (hosted in the EU, SOC 2 compliant) and in our program application database (hosted on AWS, US region). Access is restricted to the RUGCC program team. All data is transmitted over HTTPS. No partner data is stored in unencrypted form.

 

Changes to This Policy

We may update this policy. Material changes (new data sharing, new uses of phone numbers, new third-party access) will be communicated via email to all enrolled partners at least 14 days before taking effect.

 

Contact

Privacy questions: partners@kdstudy.org Program operator: Rutgers University Genetics Coordinating Center