Care and Trial Site Registry (CTSR)

Map of Germany showing sites and patients

Map of Germany showing sites and patients

  • Janbernd Kirschner
    Janbernd Kirschner
    Dr. Jan Kirschner is coordinator of the TREAT-NMD Clinical Trial Coordination Centre (CTCC) based in...
  • Kirsten König
    Kirsten König
    Kirsten König received a Master of Science Degree in Biochemistry from the University of Tübingen....

Please click here to go to the CTSR

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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, and to help to identify potential partners for upcoming research projects.

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 for neuromuscular diseases (NMDs).

Since the beginning of 2013 the CTSR expanded to cover the field of rare neurodegenerative diseases (NDD) as a branch of NeurOmics. NeurOmics is funded by the European Community's Seventh Framework Programme and focuses on research on 10 major disease categories out of the disease fields of NMDs and NDDs.

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 October 2014, 320 centres in 48 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. Fifteen official requests for site identification, often in combination with TREAT-NMD patient registry information, were received between 2009 and 2014.

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:

CTSR- patients total

Content of the CTSR:

  • General Site Information
  • Patient Cohort
  • Care Settings
  • Research and Education
  • Clinical Trial Infrastructure

A complete list of items can be found in the information chart. For more information on the CTSR you can download the CTSR flyer or contact the TREAT-NMD secretariat.

Also a paper on the CTSR has been recently published in the Orphanet Journal of Rare Diseases:
The TREAT-NMD care and trial site registry: an online registry to facilitate clinical research for neuromuscular diseases
Rodger S et al., Orphanet Journal of Rare Diseases 2013, 8:171

DOI: 2010.1186/1750-1172-8-171

 

Please click here to register your site or to update
information of your site in the CTSR

 
11 Nov 2014