The PSC Patient Databases Working Group requested that the Forum for Collaborative Research create a registry webpage to highlight the various PSC databases currently available. Overall, the goal of this webpage is to sensitize and inform PSC patients about specific registries that are available for them to join and to encourage researchers to engage in data-sharing through collaboration.
PSC Partners Patient Registry
CALID Registry
Registry of the European Reference Network for Rare Liver Diseases
UK-PSC Database and Biobank
PSC Partners Patient Registry – 1,150 participants (01/2018)
The PSC Partners Patient Registry is an international patient-driven database that was created in 2014 by the non-profit patient organization PSC Partners Seeking a Cure (www.pscpartners.org) in collaboration with the NIH Office of Rare Diseases Research (ORDR) (https://rarediseases.info.nih.gov/). PSC patients, or caregivers representing them, opt-in to provide health and quality of life data on an online database. The registry crosses national and institutional boundaries and includes PSC patients treated in non-specialized centers. Only de-identified data leaves the registry: Patients meeting inclusion/exclusion criteria for a study or clinical trial are contacted and informed about their eligibility and can choose to connect with the researcher. The goal of this prospective registry is to facilitate and speed-up PSC research by providing the official voice for the unmet needs of the PSC patients, by serving as a recruiting tool for clinical trials and studies, and by disseminating academic surveys to registry participants in support of PSC studies.
| Requirements to join the registry |
Anyone with PSC (with or without liver transplant)is invited to join the PSC Partners Patient Registry. https://pscpartners.patientcrossroads.org/ |
| Age of participants |
All ages |
| Geographic area the registry covers |
Worldwide |
| Other pertinent information about the registry |
A priority of the PSC Partners Patient Registry is to ensure the protection of the PSC patient’s privacy. The registry and the data belong to PSC Partners Seeking a Cure. To protect our participants, our registry has been reviewed and approved by an Institutional Review Board (IRB). All registry network transmissions are encrypted for protection. |
| Contact and email |
Rachel Gomel This e-mail address is being protected from spambots. You need JavaScript enabled to view it |
CALID Registry
The Consortium for Autoimmune Liver Disease (CALID) is a multi-center, prospective database of adults with PSC from across the US and Canada. Patients are enrolled through participating academic medical centers. Site participation is voluntarily and open to any interested medical center. A comprehensive background data collection from time of diagnosis to time of enrollment is complemented by a yearly prospective observational data update. Data is deposited in a central data repository using REDCap software. The objective of this project is to capture valuable prospective patient data which can be used for epidemiological studies and as a virtual control group for clinical trials.
Registry of the European Reference Network for Rare Liver Diseases
The Registry of the European Reference Network for Rare Liver Diseases (ERN-RARE-LIVER) is a prospective registry which will include data from patients with autoimmune liver diseases and others from over 20 European reference centres. The aim of R-Liver is to collect high quality data on presentation, treatment and outcome of diseases in order to improve the quality of patient care throughout Europe.
| Requirements to join the registry |
Associate to the ERN-RARE-LIVER, local ethics approval, data sharing agreement, informed consent |
| Geographic area the registry covers |
European Centres, associated centres worldwide |
| Age of participants |
Children and adults |
| Contacts and email |
Prof Dr Christoph Schramm, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany This e-mail address is being protected from spambots. You need JavaScript enabled to view it |
UK-PSC Database and Biobank - 2,150 participants (01/2018)
UK-PSC was set up in 2008 in collaboration with the patient organisation, PSC Support. UK-PSC effectively taps into the unique nature of the UK health system and network to include a cross section of PSC patients from early stage PSC to post transplant. Over 140 hospital trusts and health boards in the UK are approved study sites, and any PSC patient, whatever their age, can be approached to join. The study was opened up to paediatric recruitment in May 2016. Adult patients whose hospital is not an approved site can also join via self-referral.
UK-PSC is now a well-established, comprehensive database and biobank of over 2,150 people with PSC from hospitals all over the UK. UK-PSC actively encourages research projects to utilise UK-PSC data.
| Requirements to join the registry |
Anyone with a diagnosis of primary sclerosing cholangitis or autoimmune sclerosing cholangitis (with or without liver transplant) in the UK is invited to join UK-PSC. www.uk-psc.com |
| Geographic area the registry covers |
United Kingdom |
| Age of participants |
Children and adults |
| Other pertinent information about the registry |
Collection: ·Blood samples for DNA and serum extraction supplied on initial consent ·A prospective cohort, with ethical approval for annual resampling of clinical data, participant data and participant bloods ·Detailed patient questionnaire ·Detailed summary of patient’s condition and medical history sent by referring doctor (via clinician questionnaire) ·Pruritus questionnaire for adult participants ·Direct contact with participants about participation in research |
| Contact and email |
UK-PSC team (
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
) |