Finding studies
Finding studies
Take this into the appointment.
Saves the questions and what to expect into your notes, next to the visit they belong to.
Lead
University of South Florida
With
To gain an understanding of the "Diagnostic Odyssey" patients with mitochondrial disease undergo the Odyssey2 survey will address the following 7 questions. The first 6 are the same as in Odyssey1. 1. How much time typically elapses between when patients initially notice symptoms of a mitochondrial disorder and when they receive the diagnosis of mitochondrial disease? 2. How many physicians do patients typically see before they receive the diagnosis of mitochondrial disease? 3. What testing do patients typically undergo? 4. What other diagnoses, if any, do patients typically receive? 5. How did receiving a mitochondrial disease diagnosis impact the patient's life? 6. If the patient were to learn that their mitochondrial disease diagnosis was incorrect, what impact would that have? 7. Have any of the above changed since Odyssey1 in the RDCRN results? Upon collection, the survey data will be stored by the Rare Diseases Clinical Research Network (RDCRN) Data Management and Coordinating Center (DMCC) at the University of South Florida. Upon conclusion of the study period, the data will be de-identified prior to being sent to Dr. Seamus Thompson at the NAMDC Data Coordinating Center (DCC). The data will be analyzed by a team which will include Drs. Thompson, Hirano, Karaa, and Yeske; and Ms. Shepard, the project statistician. All data collected will be sent to a Federal data repository to be stored indefinitely per the current RDCRN data sharing policy.
Age
0–99
Sex
ALL
Healthy volunteers
Not accepted
