The ECD Global Alliance (ECDGA) realizes that accessing ad recruiting patients is one of the difficult aspects in performing ECD-related research. The ECDGA is able and willing to help researchers around the world to gain access to patients.
Today, the ECDGA remains in email contact with all ECD patients, from around the world, registered with the organization. Should you have a need to reach ECD patients as part of your research, please contact the ECDGA. We are ready and willing to transmit relevant information about research studies to patients and act as a conduit to share research needs with the patient community. This has been successfully done for multiple research teams.
In addition, the ECDGA is sponsoring the development of an ECD Patient Registry being developed jointly at Memorial Sloan Kettering Cancer Center (MSKCC) and Newcastle University. The purpose of this project is to create a sustainable and grow-able ECD Patient Registry database to compile comprehensive data about the diagnosis, clinical management, treatment outcomes, and patient-centered outcomes of ECD patients worldwide. This collective information would be available to the ECD patient and scientific community to allow for (1) the most rigorously evidence-based treatment recommendations to date and (2) for the design of rational clinical trials to optimize clinical and patient-centered outcomes in ECD. For more information about this project, please contact the ECDGA.
Last updated: December 3, 2015