What is the aim of Georgian primary Sjogren’s syndrome registry onset?
Our project aims to create a biobank of individuals with Primary Sjogren's syndrome in Georgia. Biobank is a database of clinical data corresponding with relevant blood samples in order to perform genetic epidemiology screening in future. The ultimate aim of the project is to facilitate high quality clinical and academic research as well as clinical trials of Sjogren’s syndrome.
The pSS Registry is:
A confidential database of people with pSS. It collects information about the pSS symptoms experienced by affected individual.
A web-based questionnaire that is filled out by individualwho have pSS.
A replacement for all previous registries.
Why it is important to join the pSS Registry:
To be successful, the pSS Registry will need to involve as many people who have pSS as possible. It important that all types of pSS are represented.
pSS is a rare disorder and very little is known about its natural history.
The Registry will gather accurate information about pSS.
This information will provide insight into how pSS is experienced across the life span. This information is not currently available.
The Registry will encourage more research into pSS.
Other benefits of participating in the pSS Registry:
Through the Registry you will be offered the opportunity to participate in a variety of quality research studies, including surveys and clinical trials. This will lead to learning more about the basic science, treatments, potential cures, and natural history of pSS. You will learn about the latest in pSS research.
How the pSS Registry works:
The web-based questionnaire is filled out by adults who have pSSI.
The information is recorded in a secure database, and each participant is assigned an identification number. Your personal information is protected and will never be released without your permission.
Information in the Registry will be studied to see what it shows about symptoms at every stage of life and in every type of pSS.
The pSS Registry will be advertised to researchers. The existence of a database of information about pSS
and the ability to contact people with pSS who might be interested in participating in a research study will
encourage more research.
When a researcher wants to use the pSS Registry for a study, they send a request with detailed information about the project to the pSS Registry Manager. All research projects must be approved by the Registry Advisory Committee, which assesses quality of study design and safety.
If you are eligible for a study, based on the information provided in the questionnaire and the scope of the research project, you will be notified by the Registry Manager and asked if you wish to participate.