Frontline Research Partner FAQ

A voluntary program for community physicians, advanced practice providers, nurses, and renal dietitians who share IRB-approved information about The Rutgers University Study of the Genetics of Kidney Disease with their patients. Partners distribute materials. Patients decide whether to engage.

The study team at Rutgers, led by principal investigator Dr. Tara Matise, in partnership with the National Kidney Foundation. The Regeneron Genetics Center handles genetic sequencing.

Program contact: partners@kdstudy.org.

No. It is not a credential of any kind. It is a preferred-partner program — a structured way to collaborate on patient referrals to the study.

No. The Rutgers study is an observational genetics study. Participants provide a saliva sample and complete online surveys. No investigational drug or device is involved. The study is registered on ClinicalTrials.gov. Full details can be found at kdstudy.org.

No. There is no payment, royalty, or financial benefit for patient referrals or any other program activity. This is intentional — paying for research referrals would raise serious ethical and regulatory concerns.

Deploy the materials in the standard placements described in your Segment Deployment Guide, and mention the study to patients when it fits naturally. Partners who do this at a sustainable pace — at least a few mentions per week— are doing the program correctly. There is no quota, no minimum, and no pressure.

Complete the three-minute form at kdstudy.org/partner. Most partners are auto-approved within minutes and receive a welcome email with their practice code and next steps.

Name, credentials, practice affiliation, role, and work email. National Provider Identifier (NPI) is optional but speeds up validation. We do not collect licenses, DEA numbers, or employment verification.

Yes. Renal dietitians (NPI taxonomy 133V00000X), licensed clinical social workers (1041C0700X), nurses, NPs, PAs, and fellows are also welcome.

The first 75 practices enrolled by September 1, 2026 receive permanent Founding Partner recognition. Founding partners receive an auto-shipped welcome kit and a listing in the public partner directory. Program mechanics are the same for all partners.

Generally no — you are sharing IRB-approved materials for a study conducted by Rutgers, not conducting research yourself. However, some health systems require administrative or research-office sign-off before their staff can participate in outside research programs.

If that applies to you, enroll in the study yourself (which commits nothing) and contact partners@kdstudy.org — we will provide whatever documentation your institution needs for internal review.

Yes. One person acts as the practice liaison; other staff are listed as participants.

That the study does not return individual DNA results. It is research, not a clinical genetic test. Patients often assume they will receive a personal risk report — they won’t. If you memorize one fact beyond the approved phrasing, make it this one.

Direct them to kdstudy.org. This is the correct answer, not a limitation. The study site is the authoritative source. Partners who try to answer detailed protocol or consent questions from memory create risk for themselves, the patient, and the program.

You are not involved in consenting. Your role ends at making the study available. You share a material that describes the study.  Consent is handled entirely by the study team. Patients who visit kdstudy.org will go through the full IRB-approved consent process there, where they will have access to the study staff for any questions.

Do not speculate. Approved response: “The study is research, not a clinical genetic test, and it doesn’t return individual DNA results. Your nephrologist can talk with you about whether clinical genetic testing makes sense for you.”

Don’t say it. Email partners@kdstudy.org and ask. Most questions are answered within 24 hours.

The first 75 practices enrolled will receive an auto-shipped physical welcome kit. It includes printed materials for patient-facing deployment, a digital badge, access to the Partner Dashboard, and a public-facing profile page designed for your patients.

No. Materials are IRB-approved. Any alteration — even minor edits — would require re-review and breaks the attribution codes. If a variant would genuinely serve your practice (different language, size, or co-branding), request it at partners@kdstudy.org and we will evaluate.

Every material carries a URL with your practice code and role tag — for example, join.kdstudy.org/r?C.GRN-MD-042. When a patient scans the QR code or types the URL, the system logs that engagement came from your practice, role, and (where applicable) you individually. No patient-identifying information is collected or shared with you — attribution is aggregate, at the practice and role level.

No. The program is zero-PHI. You will never see which specific patients engaged with the study. Quarterly impact reports show aggregate counts: unique visits to the study site, how many began enrollment, and how many completed it — broken down by role.

Quarterly by default. You can opt into monthly reports if you want a faster feedback loop.

Yes — in your email signature, on professional social profiles (LinkedIn), and on your practice website. You may not use Rutgers or NKF logos outside the provided badge. You may not co-brand your practice with the study.

No. There is no contract, no term, and no minimum. You can stop at any time by emailing partners@kdstudy.org or clicking unsubscribe on any program email. Your practice code is retired and any directory listing is removed within seven days.

HIPAA does not apply to the program because no PHI is exchanged. You hand a patient printed material — that is not a disclosure. The patient then interacts with the study site directly. You are not a covered entity for the study, and the study is not a business associate of your practice.

The Regeneron Genetics Center performs genetic sequencing on de-identified DNA and funds the research study. The study is led by Rutgers; IRB oversight, data governance, and study design are all Rutgers. The consent document explains the full arrangement. For patient questions that require detail, route to the consent and the study team.

Route questions as follows:

• Program questions (materials, attribution, workflow, enrollment): partners@kdstudy.org
• Study questions (protocol, consent, data, participant experience): kdstudy.org contact form or the study’s patient-facing email
• Compliance or ethics concerns: partners@kdstudy.org with “compliance” in the subject
• Urgent matters: partners@kdstudy.org with “urgent” in the subject — monitored same-day during business hours

A quarterly virtual partner huddle is open to any enrolled partner who wants to attend. It is optional — a place to ask questions, hear what other practices are doing, and surface issues directly to the program team. It is not a required meeting or ongoing time commitment.

Email partners@kdstudy.org. Past requests have included deeper EHR integration, patient portal banners, co-branded educational sessions, translated materials, and local events tied to the program. Most are feasible with planning.

Email partners@kdstudy.org or click unsubscribe. Your practice code is retired within seven days and any directory listing is removed. No exit interview required. The only ask: allow patients who already have materials to complete any engagement they have started — the materials continue working after your code is retired.