At our 2016 conference in New Haven, Dr. Christopher Bowlus made an urgent call for PSC patients to join our patient-driven Registry. So far, within two years, close to 900 PSCers have joined the PSC Partners Patient Registry. Whether you have already joined our Registry or are thinking about joining, you might be curious about how we use the data in our Registry to progress PSC research. So far, here’s a taste of what has been done with the Registry:
Registry data has been used to create three poster presentations in major international liver and GI meetings;
De-identified data was used to create a patient reported outcome tool for Gilead Pharmaceuticals conducting a clinical trial for PSC, and PSCers who met the required criteria were subsequently recruited;
The Registry provides a crucial tool for PSC Partners as we work with each of the pharmaceutical companies that pursues PSC treatments;
The Registry has served as a recruiting tool for clinical trials and for surveys that have been pivotal in showing the hepatology world that PSC patients are committed, engaged and easily accessible to help move cutting-edge research forward.
In his presentation at the conference, Dr. Bowlus urged PSCers to join the PSC Partners Registry because this Registry is available to everyone, and can reach PSCers that are not connected to large research centers that have their own PSC registries. He listed several of the major PSC registries including PSC Partners, the International PSC Study Group, PROGRESS (Mayo Clinic), and the UK and Dutch registries. He said:
“Patient participation in registries is VITAL. Researchers are collaborating, not competing. Participate early and often. This is not voting! Encourage others to participate, especially young men who are less likely to join registries!”
Registries are difficult to create, expensive, and each registry collects unique information. PSC Partners is grateful to have this powerful tool, and we need your participation to give PSCers a loud and clear voice. If you haven’t already done so, please join our Registry today. If you have any questions, feel free to email our Registry Coordinator.
