Adina Wise is undertaking a research study to determine the rates of Parkinson disease in patients and family members with Niemann-Pick Disease (NPC and ASMD). Currently, there is information suggesting that mutations in the NPC1, NPC2 and SMPD1 genes may cause a susceptibility to Parkinson disease. Adina’s goal is to gather data about the experience of Niemann-Pick disease patients and their family members with Parkinson disease and Parkinson disease symptoms.
Adina is a 3rd year medical student at Jefferson Medical College in Philadelphia, USA. Adina is currently working with Dr. Melissa Wasserstein, Associate Professor of Pediatrics at the Children’s Hospital at Montefiore, New York and Dr. Roy Alcalay, a Parkinson’s disease specialist at Columbia University Medical Center, also in New York.
Participants may choose not to answer any question that they do not wish to answer. They may also choose to stop taking the survey at any time.
Participants must be a Niemann-Pick disease patient or first-degree family member of a Niemann-Pick disease patient. If you do not have Niemann-Pick disease, or do not have a first-degree family member with Niemann-Pick disease, you will not be able to participate. However, we encourage those with and without any family history of Parkinson’s disease to participate.
Adina wants to emphasize to potential participants that the researchers are very interested in recruiting any individuals with NPD Type A, B or C or their first-degree family members, even if they have no family history of Parkinson’s disease.
Individuals who complete the online survey will have the opportunity to read an information sheet about the study at the beginning of the survey and participants will express their consent by completing the survey.
To protect the identity of research subjects, no identifiable information will be collected and in any publication about this research, no private information will be used.
Support for participants will be available throughout the study. If participants have any questions about this research, they may contact Dr. Melissa Wasserstein: mwassers@montefiore.org Dr. Roy Alcalay: rna2104@cumc.columbia.edu
Click on the link below to begin the survey:
https://cumc.co1.qualtrics.com/SE/?SID=SV_eJpBqCkg5NAgEcd
