Welcome to the Care and Trial Site Registry
and neurodegenerative diseases
The aim of the Care and Trial Site Registry (CTSR) is to help the pharmaceutical industry and clinical investigators select trial sites as well as to help to identify potential partners for upcoming research projects.
The CTSR provides information relevant
- to clinical studies (such as personnel, facilities and patient population)
- to the assessment as centres of expertise according to the EUCERD criteria
The industry and academic institutions have shown quite an interest in the data in the CTSR for their feasibility studies for clinical trials. Eighteen official requests for site identification, often in combination with TREAT-NMD patient registry information, were received between 2009 and 2015.
You have the choice of registering your centre as a:
- centre for neuromuscular diseases (NMDs)
- centre for neurodegenerative diseases (NDDs)
- or both
Depending on your speciality as a centre, the CTSR questionnaire will lead you through questions that are shared between the two fields of diseases and those that are specific for NMD centres or NDD centres, respectively.
Registering is free of charge.
New feature: PhenoSearch
The PhenoSearch facility within the Care and Trial Site Registry (CTSR) allows users to enter information in order to seek and contact colleagues who see patients or
families with a similar phenotype. Those already registered with the CTSR are now able to view cases already posted and identify those of research interest where
collaboration might be possible.
This is a really important and significant expansion of the CTSR which will make it easier for researchers and clinicians across the world to share information about puzzling cases or undiagnosed patients and which will hopefully facilitate collaboration between groups through 'match-making' those with similar cases.
PhenoSearch allows users to list a working diagnosis, description of clinical phenotype, results of any investigations, mode of inheritance and photos with the appropriate consent. Other members of the CTSR will be alerted to the new post by email and can view the details securely by logging in.
The map shows sites registered in the CTSR
|NMD site||NDD site||site treating both disease groups|
To see a complete list of the sites in the CTSR click here.
About the CTSR
One of the major organizational 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 specialized centres worldwide.
As of January 2016, 330 centres for NMDs and/or NDDs in 49 countries have joined the registry. Originally planned as a registry of potential sites for multi-center clinical trials, the database has attracted significant interest from industry and academic institutions. Eighteen official requests for site identification, often in combination with TREAT-NMD patient registry information, were received between 2009 and 2015.
We are looking forward to extending the success of our CTSR into the field of NDDs, and foster interactions between researchers among both fields of diseases.
Benefits for registered sites:
- Increase publicity of your center among patients, clinicians and industry
- Potential participation in clinical trials and research projects
- Participation in an international network of centers
Benefits for industry and researchers:
- 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
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
For recent news on the CTSR see our Newsletter June 2014
The content published on this website including the questionnaire and data entry system has been developed by the University Medical Center Freiburg within the TREAT-NMD Network and is subject to copyright laws. Any utilisation without prior explicit approval by the University Medical Center Freiburg is in violation of the German Copyright Act. Copies and downloads to facilitate data entry are permitted. For any other use please contact firstname.lastname@example.org.