Resources
Get Involved
Volunteers Needed
You Can Contribute to Parkinson's Disease Research
How Can You Help?
Participate in a research study to help us better understand Parkinson's disease and its effect on cognition.
What is the Research Study About?
This is a longitudinal, observational study that aims to learn more about Parkinson's disease. One of the goals of the study is to improve the care of patients. Visits can take place in-person or
via telemedicine.
What Will I Be Asked to Do?
You will be asked clinical information similar to information obtained at a routine doctor's visit. We will also collect additional information that might not be part of a routine visit such as tests of cognitive and neurological function and assessments of daily living. We will also ask you to have your blood drawn. You may be asked to have an MRI and/or a lumbar puncture (LP), both of these procedures are optional.
Will I Be Compensated?
Yes!
Would You Like to Learn More? Complete this form to be contacted by one of our research staff.
You can also contact Gina Mamikonyan at 215-615-3085, Eugenia.Mamikonyan@pennmedicine.upenn.edu
Enrolled Participants
Brain Donation Information:
As part of your participation, we would like you to consider making a very important contribution to the advancement of our understanding of what causes PD and related disorders. For two decades, doctors at the Parkinson’s Disease and Movement Disorders Center at Pennsylvania Hospital and neuroscientists at the Center for Neurodegenerative Disease Research at Penn have collaborated to pursue the fundamental cause of Parkinson’s disease through research on human brain tissue. Many of our patients over the years have generously donated their brains at the time of death to the University of Pennsylvania “Brain Bank.”
Becoming a brain donor is a noble gesture to support a noble cause. Since Parkinson’s disease is a uniquely human condition, it is only by studying human brain tissue that scientists will find the ultimate answers to such pressing questions as what causes it, why are some people more susceptible than others, what are the cellular abnormalities in the brain responsible for progression, and how will we advance the search for better treatments and, ultimately, a cure.
If you and your family decide to donate, please have your next-of-kin sign three copies of the initial authorization for autopsy form. Send the funeral director of choice one copy, one copy is for you, your spouse, or next of kin to keep and the last copy should be sent back to us in the enclosed self-addressed stamped envelope. At the time of passing, a family member need only phone the funeral director of choice and have them call the Center for Neurodegenerative Disease Research at 215-662-4474 and make arrangements for transportation to and from the University of Pennsylvania Medical Center.
Thank you again for making our research possible. We understand this decision can be difficult. Please don’t hesitate to call us with questions. You may also call our clinical research coordinator at 215-615-3085 with any questions.
Steps to take at time of death
For the family: Contact the funeral director and indicate that the body must be transported to the Hospital of the University of Pennsylvania (HUP) right away. The funeral director then contacts the Center for Neurodegenerative Disease Research (CNDR) by phone (215-662-4474 or 215-738-3534) to alert the staff of the passing, and make them aware of the wish to donate the brain. After the autopsy (which usually takes about two hours, and will not leave any visible marking), the funeral director will pick up the body and return it to the funeral home.
Right before the autopsy, a physician from the CNDR will contact your spouse or next of kin to confirm the intention of tissue donation for research purposes and to obtain final consent.
For the funeral director: Contact HUP Pathology staff to arrange transportation of the patient to the Hospital of the University of Pennsylvania. The funeral director CANNOT leave the patient’s body in the morgue without HUP Pathology staff’s knowledge.
To reach HUP Pathology, call CNDR at 215-662-4474 Monday through Friday, 9am-5pm, after hours please call 215-738-3534. A copy of the death certificate is not required.
Other Resources
Biosamples
A unique ADNI-like resource component of this U19 is the use of procedures we developed over the past 20 years to share biologicals obtained through this U19 Center and from prior collections of CSF, plasma, serum, DNA/RNA and brain samples from AD and LBD patients who have been followed through NIH-funded programs.
To obtain biosamples, investigators must have an active IRB approval for their studies involving human tissues. This IRB approval must accompany the request form below, which must be completed and signed by the requesting principal investigator.
Download the Biosample Request Form here.
Please send Requests, IRB Approval, and Questions to:
Allison Ward
PennCNDRbiobank@pennmedicine.upenn.edu
Data Sharing
Penn Neurodegenerative Data Sharing Committee (PNDSC)
The goal of the Penn Neurodegenerative Data Sharing Committee (PNDSC) is to progressively and compliantly share the rich sources of multimodal data collected in the Penn neurodegenerative community with internal and external research groups to foster collaboration and open-science.