AGI-TSR is an online database of specialized sites that see patients with ataxias. It holds site-level information relevant to clinical studies, including trial experience, information on personnel, facilities, and ataxia patient populations at the participating sites around the globe in a readily available, standardized fashion. It does not contain identifiable patient data.
This information can help identify sites meeting specific criteria for a range of purposes:
- enabling the pharmaceutical industry and clinical investigators select prospective sites for multi-centre clinical trials,
- permitting the identification of potential partners in research collaborations,
- and supporting the collection and analysis of site-specific data for coordination and analysis in research networks.
AGI-TSR is using the technical platform of the Care and Trial Site Registry (CTSR). This includes the development of a FAIR data endpoint, enabling interoperability with other rare disease infrastructures such as the Virtual Platform of the European Joint Programme on Rare Diseases.
Register your Site at the AGI-TSR!
Benefits for registered sites include:
- Increasing visibility of your site among patients, researchers, clinicians, and industry
- Potential participation in clinical trials and research projects
- Participation in an international network of centers
To register your site, please follow this link:
Do you need information on Ataxia sites for your research?
Benefits for industry and researchers:
- A single point of access for clinical trial or research project feasibility information
- Draw on an existing network of specialized ataxia sites for your research project
- Improve recruitment by combining site-level data with information from patient registries, in a joint enquiry with registries hold by AGI partners
AGI-TSR Dataset Details
- Genetic ataxia subtypes (total number, <18, >=18 (legally motivated, consent), ambulatory/non-ambulatory (estimate)). Selection criterion: most likely to be treatment-trial relevant within the next 5 years.
- Clinical Trials Experience
- Availability of the facilities
Please find the full dataset here.