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Hi all; I think this study was first mentioned in the autumn '98 Parkinson Report (NPF) as "Genetic Study of Parkinson's Disease" with a contact (Nancy Maher) and a tel. # (1-888-533-9113). All the best ..........murray On 24 Jul 99 at 14:51, Michel Margosis wrote: > Date: Sat, 24 Jul 1999 14:51:01 -0400 > Reply-to: [log in to unmask] > From: Michel Margosis <[log in to unmask]> > Subject: PROGENI/study > To: [log in to unmask] > Denis just sent this to the French list, but it looked too important, > so that I am taking the liberty of resending it to you. Just below > the couple of line in French is the English Text. > Michel Margosis > ========================================== > Subject: PROGENI/etude > Date: Fri, 9 Jul 1999 09:05:01 -0000 > From: Denis Rocheleau <[log in to unmask]> > Reply-To: "Parkliste" <[log in to unmask]> > To: "Parkliste" <[log in to unmask]> > > Pour votre curiosite et info, une demande de sujet pour une etude sur le > > Parkinson et le cote genetique.En coop`ration entre des universitees > americaines et canadiennes.Voici les criteres qu'on demande. > Denis > --------------------------- > Parkinson's Research: > The Organized Genetics Initiative (PROGENI) > --------------------------------------------------------------------------- > > What is PROGENI? > Parkinson's Research: The Organized Genetics Initiative, also known as > PROGENI, is a research effort between the Parkinson Study Group (a group > > of neurologists from throughout the United States and Canada), 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. These groups will study genetic and > other risk factors which may be important in the development of > Parkinson's disease. The study is 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. > > a.. Who can participate in this study? > To be eligible to participate in this study, families must have at > least 2 living brothers or sisters affected with, or possibly affected > with, PD. They cannot have participated in any other genetic research > project for PD. Both affected family members must be willing to > participate. > > b.. What would I have to do if my family were to participate? > Participants will be asked to complete a Family History Questionnaire > (FHQ), providing information about the history of Parkinson's disease in > > the family. They will also be asked to sign a Release of Medical > Information form 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. > > c.. What else might we have to do if we were selected to be a part of > this study? > You and your sibling(s) could be asked to undergo a Study Visit at the > > Parkinson Study Group (PSG) site closest to your residence. At this > Study > Visit you will be asked to complete questionnaires regarding PD > symptoms, > medical history, places of residence, occupations, mood, mental status > and activity level. A blood sample will be drawn for DNA extraction. > This > visit will take about 2 hours. > > d.. What is DNA and how will it be used? > DNA is the genetic material that determines such things as hair color, > > eye color or 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 Study Group DNA Repository where it will > be > stored for possible use by other scientists in future studies related to > > Parkinson's disease. > > e.. What else should I know about this study? > > a.. Participation is totally voluntary. > b.. Information you provide to us will be kept confidential. > c.. Data collected from this study will not become part of your > medical records. > d.. There will be no cost to you to take part. > e.. There is no payment for participation. > > > f.. I want to participate. What should I do? > Residents of the United States please call 1-888-830-6299 (toll free) > to enroll in PROGENI or to ask questions about the study. Those residing > > outside of the United States please call 1-317-274-5734. You may also > contact Cheryl A. Halter, MS by e-mail for more information. > > [log in to unmask]