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
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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.
