Listed below are the current objectives and eligibility:
Dystonia International Patient Registry: Terms and Conditions for Investigators
Investigators who have their requests approved, agree to the following Terms and Conditions. The Dystonia International Patient Registry (DIPR) Scientific Advisory Committee, agree to the following Terms and Conditions. The DIPR requires a signed form from the Investigator prior to providing access to the registry’s information.
The data is owned by the DIPR Sponsors. Any effort by the Investigator to provide unauthorized access to the information or to sell DIPR data is strictly prohibited.
Conditions of Granting Access
The DIPR expects that all approved Investigators will publish meaningful results and findings of their work. Investigators must acknowledge the DIPR in any publications, conferences or any other presentations that result from the use of the Registry (preferred form is we suggest the language we want used here. It is requested that a copy, preferably in an electronic form, of any publication that resulted from work supported in whole or in part through the use of the DIPR be sent to the DIPR (address of contact).
Investigator must notify the DIPR in writing if the Investigator changes institutions or discontinues work on an approved project.
Upon discovery of any Invention (meaning all inventions, products or processes, innovations, discoveries, findings and improvements – whether or not patentable, and other materials discovered, conceived or first reduced to practice in the performance of research supported in whole or part by the DIPR), Investigator will promptly (within 30 days of filing a patent application) report such discovery to the DIPR.
Although there is no cost for using the DIPR, Investigator is responsible for all expenses associated with the research being conducted utilizing data from the DIPR.
Investigator will comply with all applicable laws and regulations. Furthermore, Investigator assures the DIPR that an IRB approval has been obtained and will comply with all IRB and HIPPA requirements.
Investigator agrees to hold harmless the DIPR and its sponsoring organizations (officers, directors, employees and affiliates) from any and all liability, including any and all direct, indirect, incidental, special, consequential or exemplary damages, and any and all costs and/or expenses (including attorneys’ fees) resulting from research conducted utilizing data from the DIPR.
All people with a confirmed laboratory test for Dystonia and their families.
There are no exclusion criteria for participation in the DIPR registry. Registry participation does not exclude participation in other clinical studies.