The study of post-mortem tissue from individuals with Chiari malformation is critical to understanding the cause of Chiari and could lead to advances in diagnosis and treatment of this devastating neurological disorder. Thus, Conquer Chiari and the UMB Brain and Tissue Bank have joined efforts to accelerate research on Chiari malformation by creating the first Chiari patient tissue bank.
Conquer Chiari deeply thanks all those who chose to donate. The decision to donate is yours.
Opportunity to participate in post-mortem tissue donation
If you are diagnosed with type 1 or 2 Chiari malformation by a physician, you may preregister with the UMB Brain and Tissue Bank. Please click here for information on how to register. On the "Register ON-LINE" form check "Conquer Chiari". If you elect to complete the mail-in pdf form, please make a notation that you are supporting Conquer Chiari.
Preregistration allows for quick recovery of tissue as tissue recovery should be completed within 24 hours after death. Note: the tissue recovery will allow normal viewing of the body and does not delay funeral arrangements. Call 1-800-847-1539 (or 410-706-1755) to discuss any aspects of tissue donation. In a case of emergency or sudden death, please telephone the Bank immediately rather than registering on line.
Opportunity to participate in other Chiari research studies
If you are a diagnosed Chiari malformation patient and plan to make a post-mortem tissue donation, Conquer Chiari also recommends that you participate in other ongoing research studies being conducted by the Conquer Chiari Research Center at the University of Akron. To find out more about these studies and information on Chiari malformation please visit http://www.conquerchiari.org.