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.
>
>
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