During 2014 the Care and Trial Site Registry (CTSR) has been further expanded and updated. Started in 2007 under TREAT-NMD, the CTSR is a network that helps the pharmaceutical industry and clinical investigators select trial sites as well as helping to identify potential partners for upcoming research projects. The registry functions as a database of care and trial sites, providing information to industry and health professionals seeking specialized centres worldwide.
Earlier in 2014 a new and exciting feature of the Care and Trial Site Registry was announced which allows clinicians to upload anonymised details of unsolved cases for which they are looking for additional families. PhenoSearch means that a descriptive text and supporting images can be securely placed on the CTSR server with notification going to all registered users who can then log in, view details and make contact with the clinician if the case is of interest. Since its launch, PhenoSearch has received 6 cases which have been accessed by members across the network many times. We hope to be able to report on the first successful ‘matches’ in 2015.
Throughout the year, the CTSR has also been receiving more registrations from clinics around the world. This has been particularly significant in the neurodegenerative field – these sites became eligible to join the CTSR at the end of 2013 as part of the FP7-funded NeurOmics project. As we reach the end of 2014, there are 58 centres included which see neurodegenerative patients. The total sites registered have now reached 319 across 48 countries representing a patient population of over 55,000.
Interest in the CTSR during 2014 has been high – in addition to the additional sites registered, five enquiries were received from industry. Information on patient cohort numbers, diagnostic tools and tests, equipment, care settings as well as contact data was requested.
It is clear that the CTSR is a powerful research tool for rare diseases which has been instrumental in trial-site selection, feasibility enquiries and encouraging collaboration between those working in the field of neuromuscular and now neurodegenerative disease. Over the course of 2015 the registry will continue to develop and expand in order to increase the sites registered. In particular, a focus will be made on improving even further the geographical coverage and linking between patient registries and the CTSR.
The CTSR is an online self-registration database openly accessible at https://ctsr.uniklinik-freiburg.de and we encourage all NMD and NDD centres to register.