National DBS Brain Tissue Network

Purpose

The goal of this study is to store your tissues and medical information and potentially use it in future research. Many different kinds of research use human tissues. Some researchers may develop new tests to find diseases. Others may develop new ways to treat or even cure diseases. In the future, some of the research may help to develop new products, such as tests and drugs. Some research looks at diseases that are passed on in families (called genetic research). Research done with your tissues may look for genetic causes and signs of disease.

Procedures

If you agree, your brain and the DBS leads (from now on referred to as tissues) will be collected and stored after your death for future research.

In addition the following medical information will be collected, used, and shared with qothers as part of your participation in this study.

  • Name*
  • Mailing Address*
  • Date of birth, date of death, age, gender, clinical diagnoses, co-morbid diagnoses
  • Diagnosis for which DBS was performed
  • Clinic and Procedure dates
  • DBS Lead information (manufacturer, model, date of implant)
  • DBS programming information
  • Complete past medical history
  • Records of physical exams
  • Laboratory, x-ray, MRI, and other test results
  • Diaries, assessment results and questionnaires
  • Records about study medications or drugs
  • Records about study devices
  • Information related to your mental health condition

If you are interested in learning more about this study, please contact Dr. Vedam-Mai at (443) 935-3935 or email vinved@ufl.edu.

Age

18 to 65
65 and over

Gender

Male
Female

Monetary compensation

No

Can be done from home

No

Keywords

Parkinson disease, Parkinson's disease, Parkinson's disease - resources, Neurology

Principal Investigator

Vinata Vedam-Mai, MSc, PhD

Department

Neurology

Contact Information

vinved@ufl.edu

(443) 935-3935


Be an Informed Participant

Before deciding to participate in a research study, take time to learn about clinical research, how it's conducted and your rights as a research participant. Following are some helpful resources from independent sources. Always remember that a clinical research study is research, not treatment.

Know Who to Contact

  • Eligibility: For questions about a specific study and who is eligible to participate, call or email the contact person listed for that study.
  • Your Rights: For questions about your rights as a research participant, contact the UF Institutional Review Boards at 352-273-9600.
  • Feedback: For general questions or feedback about study listings, email the UF Clinical and Translational Science Institute at CTSI-Studies-L@lists.ufl.edu.

Other Resources

  • HealthStreet: Health-focused services, classes and events, and opportunities to participate in research.
  • ResearchMatch.org: Join a national registry of volunteers willing to be contacted about research studies.

For Research Teams