AGI Trial Site Registry

AGI-TSR provides information on personnel, facilities, and ataxia patient populations at the participating sites around the globe in a readily available, standardized fashion. AGI-TSR is an online database of specialized sites that see patients with ataxias. It holds site-level information relevant to clinical studies, including facilities, equipment, personnel, and trial experience, as well aggregate data about their patient population. 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 collaborating with underlying technical platform of the Clinical Trial Site Registry of Treat-NMD. 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: AGI Trial Site Registry

 

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

  1. 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.
  2. Clinical Trials Experience
  3. Availability of the facilities