Patient Registry Privacy Statement  

Thank you for taking the time to complete the patient registry. We value your participation and privacy.

 

Your inclusion in this registry is very important in our efforts to increase research into the improved treatments and eventual cure of cluster headaches. 

Your medical information will not be shared with any other group or organization for any purposes. Its purpose is to build a database of people for possible involvement in future research and clinical study of cluster headaches.

  

In the event that you may meet requirements for a proposed study, only your contact information may be shared with the administrators of the clinical study.

You may also be contacted by Clusterbusters solely for the purposes of informing you of upcoming clinical studies and how you may contact the lead investigators of the study.

  

 As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and also help inform others of its existence.

 

The formation and maintenance of this registry, its use and all data is administered by the Clusterbusters Administration Panel and members of its Medical Advisory Board.

Its administration and all privacy matters shall meet or exceed HIPPA regulations.

 

 

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