Inside VIGOR: A Guide to One of the Largest Vitiligo Studies Underway
Recently, I attended a webinar about VIGOR, one of the largest vitiligo studies underway right now, hoping to hear something big. A groundbreaking new trial. A surprise discovery. A revelation that would shift how we understand vitiligo. What I found was more realistic, and honestly, more important.
The session was not a data release. It was an explanation of the study itself—what VIGOR is, how it is being conducted, who it is for, what it is trying to answer, and how enrollment works. It was the part of research most people never see—the careful building of a foundation that makes future breakthroughs possible. What stood out most? The intention behind it: a team with the expertise to lead a study of this scale and the care to communicate it in a way that respects participants as partners.
To help introduce you to this groundbreaking study, here is a clear overview of what the study is, what it involves and what it means for the vitiligo research landscape right now.
What is the VIGOR study?
VIGOR stands for Vitiligo Genetics of Onset and Relapse. The name points directly to two persistent scientific questions: why vitiligo develops in the first place, and why it can progress or return over time.
The study’s goal is to better understand the causes of vitiligo and to help predict who might be at risk of developing it—all for the sake of correcting those causes and ultimately, preventing them. This research will be conducted via a longitudinal 5-year study for 1,000 participants to include U.S.-based participants ages six and older who have vitiligo, as well as their close family members who do not have vitiligo. Participants will respond to surveys and provide skin, blood, and saliva samples.
“We hope that this study will give us insight into the root causes of vitiligo, help us to correct those causes to cure it, and may even offer ideas on how to prevent vitiligo in the first place,” said Dr. John Harris, one of the study’s co-leads, who has been studying vitiligo for over 15 years.
If you’re new to research, it’s important to note that this is not a clinical trial as the study isn’t testing a new treatment. Rather, VIGOR is focused on understanding mechanisms, onset, and relapse over time, rather than providing an intervention.
The framing of this research is bold and future-facing: help stop vitiligo before it starts. It is an ambitious goal, and it depends on something the field needs more of: large-scale data collected consistently over time.
Why this study matters
Vitiligo research has made real progress in recent years, including new treatment options for repigmentation and a growing public conversation. Still, many of the questions that shape real life with vitiligo remain unanswered: Why does it begin when it does? Why does it spread quickly for some people but stabilize for others? Why can it return even after a period of improvement?
The reason these questions are hard is that vitiligo is not quick science. Fully understanding its mechanisms, patterns of relapse, and epidemiology takes time, consistent follow-up, and studies designed to observe change as it happens.
Part of the challenge is timing. Most research captures vitiligo after it is already established. That can tell us a lot, but it often misses the earliest changes that happen before the first spot appears or right when vitiligo begins to shift.
VIGOR is designed to fill that gap. By following people with vitiligo and their close family members over years, and by collecting consistent surveys and biological samples along the way, the study aims to identify patterns that could help researchers understand onset and relapse more deeply, and potentially improve prediction of who may be at risk.
This is long-term, foundation-building work. Even without headline results today, studies like VIGOR are how the field moves toward clearer answers tomorrow, and toward a future where prevention is a realistic scientific goal rather than a distant hope.
Quick checklist: VIGOR at a glance
- What: A longitudinal research study designed to better understand vitiligo onset and relapse and improve prediction of who may be at risk
- Who: U.S. participants age six and older with vitiligo and close family members without vitiligo
- How it works: Remote participation through the VIGOR app plus mailed at-home kits
- Time commitment: Surveys every three months, at-home skin and blood samples every six months, plus a one-time saliva sample
- What it is not: A treatment trial; no medication changes required
Who can join?
VIGOR is currently recruiting individuals aged six and older who live in the United States.
The study is seeking people with vitiligo, as well as their family members without vitiligo. One important point is that the study needs more participants without vitiligo than participants with it. The plan is to enroll 1,000 people total, including 200 individuals with vitiligo and 800 close family members without vitiligo. For this study, close family members include parents, children, siblings, cousins, aunts, and uncles of someone with vitiligo.
Participation is designed for people willing to complete periodic surveys, donate samples using at-home devices, and commit to long-term follow-up.
How does the study work?
The structure of participation is consistent and straightforward.
Participants will:
- Provide one saliva sample collection
- Complete online surveys every three months using the VIGOR app
- Complete at-home skin and blood sample collection every six months using mailed test kits
The study is fully remote and does not require in-person clinic visits. Consent forms are delivered electronically through the VIGOR app. The study materials indicate that if someone cannot use the app, the team will work with them to complete the correct forms.
How does at-home sample collection work?
VIGOR is built around mailed test kits that allow participants to sample their own skin and blood without visiting a clinic. Return shipping labels are included in the package, and shipping directions are provided in the VIGOR app.
In addition to the one-time saliva sample, participants may be asked at different timepoints to provide one or more of the following: blood collected with a Tasso device, skin samples using micropatches or skin tape, and hair samples.
The study highlights several key sampling tools:
- Tasso: An at-home blood sampling device intended to reduce the need for venous blood draws and lab visits
- Skin tape strip: A specially designed adhesive that lifts skin cells from the top layers of the skin, where markers are present, with little to no discomfort, and preserves the sample for shipping
- Micro patches: Small adhesive patches applied briefly to the skin to collect a surface-level sample of skin fluid, with minimal discomfort
The latest study updates
Recent VIGOR updates emphasize the team’s efforts around study communication, participant experience, and logistics.
The team shares ongoing information through webinars which include sessions led by co-lead investigators Dr. John Harris and Dr. Manuel Garber. They invite participants to email topics they want covered and note that previous webinars are available through the VIGOR YouTube channel. The study also shares behind-the-scenes updates through Instagram at the handle @vigorstudy.
Wearables are another major focus. The materials state that Fitbits remain the main device used to collect wearable health and activity data from participants, and that the team aims to provide one to every participant as soon as possible. They also note expanding support for additional wearable devices, including Apple Watch and Garmin, for those who want to use their own device.
The updates also note that an app upgrade is planned to improve photo upload issues for participants tracking vitiligo changes.
How to learn more
Whether you want to keep this study on your radar, learn more, or potentially even enroll if that feels right for you, the best next step is to visit the official VIGOR Study website to review the eligibility and participation details directly.
On the site, you’ll find study details, frequently asked questions, blog updates and a link to recent webinars. Even if enrolling is not right for you, you can still watch for future updates, follow along with webinars, and stay informed about what is unfolding in vitiligo research right now. Sometimes progress is not a headline. Sometimes it is the foundation being built.
Summary
The VIGOR Study is a five-year research effort designed to uncover what causes vitiligo and what drives its onset and relapse, which are critical steps toward future prevention. This fully remote study enrolls individuals ages six and older in the United States with vitiligo, along with close family members without vitiligo, and collects data through a one-time saliva sample, brief quarterly surveys via the VIGOR app, and at-home skin and blood samples every six months.
Sources
- “VIGOR Study.” University of Massachusetts Chan Medical School, VIGOR: Vitiligo Genetics of Onset and Relapse, https://vigor.umassmed.edu/vigor/s/?language=en_US.
- “Study Details.” University of Massachusetts Chan Medical School, VIGOR: Vitiligo Genetics of Onset and Relapse, https://vigor.umassmed.edu/vigor/s/study-details?language=en_US.
- “VIGOR FAQ.” University of Massachusetts Chan Medical School, VIGOR: Vitiligo Genetics of Onset and Relapse, https://vigor.umassmed.edu/vigor/s/faq?language=en_US.
- “January Updates from the VIGOR Team.” University of Massachusetts Chan Medical School, VIGOR: Vitiligo Genetics of Onset and Relapse, https://vigor.umassmed.edu/vigor/s/blog/cms-blog-post/january-updates-from-the-vigor-team-MCXN5USJN7MZGLJKKOPEICPZ7KXE?language=en_US.
Medical Disclaimer: This information is intended for informational purposes only. Consult with your doctor or a professional healthcare provider for medical advice, treatment or diagnosis.
Hessa Asmani is a health sciences graduate from the University of Ottawa, researcher, and storyteller who has lived with vitiligo since she was two years old. Her lived experience has shaped both her academic journey and her advocacy—spanning research, international conferences, and community outreach through Vitiligo Voices Canada. She’s passionate about making health education more human and accessible, especially for those navigating life with a visible condition. Through her writing and work, she hopes to help others feel seen in the spaces that once made them feel invisible.