Patient Care

Progeni

The Parkinson's Disease and Movement Disorder Center of AMC is collaborating with a group of neurologists from throughout the United States and Canada, known as the Parkinson's Study Group (PSG), who have formed a collaborative effort with Indiana University School of Medicine, University of Rochester, The Ohio State University, Children's Hospital Medical Center at the University of Cincinnati and Emory University to study genetic and other risk factors which may be important in the development of Parkinson's disease. This study, PROGENI (Parkinson's Research: The Organized Genetics Initiative) is being sponsored by the National Institutes of Health and will involve 400-600 pairs of brothers and sisters throughout North America who are affected, or possibly affected, with Parkinson's disease (PD).

To be eligible to participate in this study individuals must have one or more living siblings affected with, or suspected of having, PD. Participants will be asked to complete a Family History Questionnaire (FHQ) and to sign a Release of Medical Information so that further documentation of a family history of PD can be obtained. The FHQ and Release of Medical Information will be sent to Indiana University School of Medicine, Department of Medical and Molecular Genetics for review to determine further eligibility for the study. Participants will also be asked to provide the name, address and telephone number of any sibling who is, or may possibly be, affected with PD.

Upon review of the FHQ and medical records, participants and their sibling(s) may be asked to undergo a Study Visit at the PSG site closest to their residence. At the Study Visit, which will take 1 ? to 2 hours, questionnaires will be completed regarding PD symptoms, medical history, places of residence, occupations, mood, mental status and activity level. A blood sample will be obtained for extraction of DNA. DNA is the genetic material that determines such things as hair color, eye color and other more complex traits. The DNA samples for this study will be used in an attempt to find genes that may cause an increased risk for a person to develop Parkinson's disease. A sample of the DNA will also be sent to the Parkinson's Study Group DNA Repository where it will be stored for possible use by other scientists in future studies related to Parkinson's disease.

The questionnaires, physical and neurological evaluation and blood draw will be administered at no cost to the participant. Data collected from this study will not become part of the participant's medical records, but will be kept in a confidential file as part of this study. Results of the questionnaires, examination and blood test will not be disclosed to the participant or their family.

Participation in this project is voluntary and will be limited to those individuals with living siblings affected or possibly affected with PD who are also willing to participate. Residents of the United States wishing to enroll in the project or to request additional information should contact Cheryl A. Halter at Indiana University Medical Center at 1 (888) 830-6299. This is a toll free call. Those residing outside the United States should call 1 (317) 274-5734. Information about the study can also be obtained through our web site at http://www.medgen.iupui.edu/research/parkinson/ or via e-mail at chalter@medgen.iupui.edu.