Chronic low back pain affects one in five adults in the United States and remains one of the leading causes of disability worldwide. REACH, UCSF’s Core Center for Patient-Centric, Mechanistic Phenotyping in Chronic Low Back Pain, is funded through NIH HEAL and embedded within the Back Pain Consortium (BACPAC).

Established in 2019 with nearly $30 million in NIH funding, the Center runs two large observational cohorts with overlapping participant populations: comeBACK, an in-person study of 450 adults phenotyped across four University of California sites, and BACKHOME, a fully remote nationwide e-cohort of roughly 3,000 adults, the largest prospective remote registry of chronic low back pain to date. Between the two cohorts, there are nearly 3,450 participants.

Each cohort, along with the REACH center grant, had to be shared as its own data package, a condition of their federal funding. When NIH HEAL designated Vivli as its recommended repository, Kaitlin Yee, a Research Coordinator at UCSF’s Department of Orthopaedic Surgery, took on the submission process for all three.

“It was definitely a bit overwhelming at first,” Kaitlin said, “just in terms of where to start and exactly what was required of us.”  

Each submission required four elements: a protocol, individual participant data (IPD), a data dictionary, and a statistical analysis plan. She started with Vivli’s submission checklist and a HEAL-specific tutorial video, which walked through each step, including how to connect each study’s DOI directly to the NIH HEAL Data Platform, so the data is findable from either direction. 

“You can go to the HEAL platform and the DOI for our study is linked,” she said. “I thought that was actually pretty neat.” 

Three submissions and dozens of files called for a system. The REACH team established a simple file naming convention that tied each data package to its corresponding publication, keeping the uploads organized across multiple cycles as the volume grew.

Kaitlin worked closely throughout the process with Sarah Sweet, Vivli’s Senior Clinical Research Manager. When a submission needed to be reset mid-upload, it was handled the same day. 

“Sarah has been amazing. We’ve been talking back and forth ever since we started. She’s been so responsive. I really don’t think we’d be where we are without her.” 

All three studies are now live on Vivli and linked to the HEAL Data Platform, making data from close to 3,450 participants available to researchers worldwide. For a condition that affects one in five adults and has long resisted easy answers, that reach is the payoff: every team that builds on this data gets closer to understanding chronic low back pain and how to treat it. 

The datasets shared by the REACH team are available on Vivli. To learn more about sharing your research data, visit https://vivli.org/resources/sharedata/