Integrating information sharing and cooperation.
Development of a research work of an incurable disease and treatment method is promoted.
The Rare Disease Data Registry of Japan (RADDAR-J) has constructed a system to establish a sustainable framework that provides an environment where participation is significantly beneficial for all individuals concerned with and involved in the treatment of intractable diseases, such as researchers, physicians, and patients.
We constructed a common flexible platform that can be customized for each intractable disease, providing an adaptable framework and system to enhance cooperation among all persons concerned. RADDAR-J will continuously evolve based on experience.
This platform is operated with research funding from the Japan Agency for Medical Research and Development (AMED) as part of the Practical Research Project for Rare/Intractable Diseases.
Support for registry studies of intractable diseases
RADDAR-J supports the promotion of registry studies targeting intractable diseases covered by the Practical Research Project for Rare/Intractable Diseases of the Japan Agency for Medical Research and Development (AMED) and the Research Project on Rare/Intractable Disease of the Ministry of Health, Labour and Welfare (MHLW).
RADDAR-J provides the following document templates required for the construction and operation of intractable disease registries:
- Standard research proposal
- Standard informed consent forms
- Standard operating instructions
The above are sample templates prepared based on the relevant laws, regulations, and guidelines, to meet all ethical requirements necessary in constructing a registry in collaboration with RADDAR-J.
These documents can be customized according to the needs of the individual research group.
List of intractable disease registries
The list contains the research titles approved for public release by each research group in charge.
Secondary use of data
Data collected by RADDAR-J may be available for secondary use in research.
Click here for details on secondary use of data.