Care and Trial Site Registry (CTSR)
Map of Germany showing sites and patients
- University Medical Center Freiburg The TREAT-NMD Clinical Trials Coordination Centre (CTCC) has been set up to work with pharmaceutical...
One of the major organisational hurdles to overcome before initiating a clinical trial is identifying those trial sites capable of recruiting enough patients and offering a specific standard of care and experience in clinical trials. The concept of establishing a Trial Site Registry providing information on personnel, facilities and patient population was born to help pharmaceutical industry and clinical investigators select trial sites.
The CTSR was established in 2007 as one branch of TREAT-NMD. As a partner of TREAT-NMD one of Germany‘s leading Departments of Neuropaediatrics and Muscle Disorders at the University Medical Centre Freiburg set up the CTSR.
The CTSR is a flexible database and has been continuously expanded with more items and is now also functioning as a database of care centres providing information to health professionals and patients seeking specialised centres worldwide.
As of January 2012, 274 centres in 46 countries have joined the registry. Originally planned as a registry of potential sites for multi-centre clinical trials (see background section), the database has attracted significant interest from industry and academic institutions. Nine official requests for site identification, often in combination with TREAT-NMD patient registry information, were received between 2009 and 2011.
Benefits for registered sites:
- Increase publicity of your neuromuscular centre among patients, clinicians and industry
- Potential participation in clinical trials and research projects
- Participation in an international network of neuromuscular centres
Benefits for industry and researches:
- Use an existing network for your research project
- Use the CTSR as a single point of access for feasibility information
- Improve recruitment through a combination of trial sites and patient registry data
Patients recorded until January 2012:
Content of the CTSR:
- General Site Information
- Patient Cohort
- Care Settings
- Research and Education
- Clinical Trial Infrastructure