Volunteer Tracking Systems
What began as a safety measure has quietly become a system that labels and tracks volunteers without their full consent.
Some groups now use these registries to decide who can—or can’t—participate in studies, often with little transparency or oversight.
Healthy Volunteers Alliance believes every participant deserves to know how their data is used, who profits from it, and how to protect their rights.
On this page, you’ll learn the differences between major tracking systems like Verified Clinical Trials (VCT), RSVP (Altasciences), and CTS (CenExcel)—how they operate, what data they collect, and who can access it. We’ll also explore the legal and ethical concerns behind these systems, what protections should exist for volunteers, and what steps HVA is taking to advocate for fairness and informed consent.
The Labeling Problem: “Professional Participants”
Private registries and CROs have created and popularized the term 'professional participant'—a stigmatizing label for people who screen for multiple studies. This label is not recognized by the FDA or OHRP, and it unfairly paints all active volunteers as dishonest or dangerous to research integrity.
HVA’s Position on Dual Enrollment
HVA does not condone overlapping participation in active drug studies. Our members understand that safety always comes first. However, volunteers must have the right to know when their information is entered into a registry, and screening visits where no investigational drug is taken should not be reported as active study participation.
What Are Volunteer Tracking Systems?
Across the research industry, new participant tracking systems have been created to prevent duplicate study enrollment. While their purpose is to protect study integrity, these databases have also raised major ethical and privacy concerns for healthy volunteers.
Systems like Verified Clinical Trials (VCT), Altasciences RSVP, and CTSdatabase by CenExel are now used across hundreds of research sites to collect and share volunteer data—sometimes even when no drugs are taken.
Ethical and Legal Concerns
These databases claim to protect volunteers, but often operate with limited transparency.
Many participants are unaware that they are being entered into a private registry—or that their screening data (even when no drug is taken) may be stored for decades. Labeling individuals as professional participants; has no legal basis and violates fundamental research ethics principles outlined in the Belmont Report (1979).
HVA’s Commitment
HVA will continue to advocate for transparency, fairness, and oversight of volunteer tracking databases. We believe the clinical research industry can protect study validity without violating privacy or labeling volunteers unfairly.
Understanding Your Verified Clinical Trials (VCT) Consent
When you sign a consent form linked to the Verified Clinical Trials (VCT) system, you’re agreeing to more than just one study — you’re entering a network that can affect your rights, your data, and your future participation.
This section helps volunteers understand what they’re actually authorizing when they sign these forms.
1. What You Are Asked to Authorize
• The form usually asks for permission to collect and store personal identifiers (initials, date of birth, ID numbers) in a shared registry.
• It may grant permission for future study sites using VCT to access this data for eligibility checks.
• Data may be stored for up to 25 years, and withdrawing consent might not delete all prior data.
• Authorized users — including clinic staff, sponsors, CROs, and database operators — can view your eligibility and participation status.
2. Your Rights — and What May Limit Them
• You have the right to ask how your data is collected, used, shared, and stored.
• Screening-only visits may still be logged as if you participated in a study.
• The consent may be required to even screen for a study — making ‘voluntary’ consent questionable.
• Check if you can request correction or deletion of your data and whether this will truly remove you from the registry.
3. Ethical and Practical Concerns
• Long-term data retention allows continued use and sharing of volunteer information well beyond participation.
• Some volunteers are flagged as “duplicate” or ”professional participants” based on partial matches or assumptions.
• Ambiguous wording like “future studies” makes it unclear how your data may be reused.
• Volunteers often sign under pressure to enroll, creating a power imbalance.
4. What You Should Check and Ask Before Signing
Before signing, consider asking:
• How long will my data remain in the registry?
• What identifiers are collected (name, DOB, ID, etc.)?
• Who will have access — other clinics, sponsors, or CROs?
• Will screening-only visits be logged as active participation?
• How can I request deletion or correction of my record?
• What happens if I decline to sign — will I still be able to participate in any capacity?
References & Supporting Sources
- FDA Regulations: 21 CFR Parts 50 & 56 – Protection of Human Subjects; Institutional Review Boards
- Verified Clinical Trials – https://verifiedclinicaltrials.com
- HHS/OHRP: 45 CFR Part 46 – The Common Rule
- The Belmont Report (1979) – Ethical Principles and Guidelines for the Protection of Human Subjects of Research
- CTSdatabase by CenExel – https://ctsdatabase.com
- Altasciences RSVP System -https://www.altasciences.com