This past July, the American Liver Foundation (ALF) announced the opening of a new patient registry. You may be wondering how it compares to the PSC Partners Registry and whether you should join the ALF registry.
Similarities of structure and function between the two include: a reliance on patient-reported data through registry surveys; a sharing of de-identified data with approved researchers; the ability for patients to add to or update their information through secure patient accounts; and communication with patients about research opportunities and research news.
However, the purposes of the two registries and the patient groups included in each differ in important ways.
The PSC Partners Patient Registry is for those diagnosed with PSC, and the data collected supports research specifically focusing on PSC and the challenges facing those who live with PSC. The PSC Partners Registry includes patients from more than 50 countries around the world and of any age, including children.
The only requirements to participate in the PSC Partners Registry are having a PSC diagnosis and having the ability to log onto the secure internet site to complete the surveys.
Patients complete a core clinical survey that asks questions about their clinical history and PSC symptoms. Annual survey updates provide researchers with a record of disease progression or stability. Surveys that cover other areas of PSC research interest, such as health equity or topics related to current projects of PSC Partners, are available periodically. De-identified survey data is shared with PSC Partners-vetted research teams.
The PSC Partners Registry is a powerful tool for understanding the PSC experience in a detailed and focused way, and it supports PSC research by providing the patient perspective to researchers.
The American Liver Foundation Patient Registry is for those diagnosed with any of more than 100 liver diseases. Adults 18 and over living in the U.S. may join and participate.
The ALF Registry’s stated purpose is “to provide researchers with a better understanding of liver diseases, the impact of treatments and resources for … liver disease, and how … liver disease affects [patients].” ALF may also provide educational resources to patients.
A potential outcome and benefit of the ALF Registry’s broader study of liver diseases may be the discovery of commonalities among those diseases. This could lead to research into the cross-purposing of treatments between differing liver diseases.
PSC patients are encouraged to join all registries for which they qualify. Each registry has its own purpose, and the more information that patients provide to researchers, the more quickly the researchers and drug developers may discover effective treatments for patients.