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Phone: 800-926-4797 or 941-312-0400


Data Collections - Help us help you!

PWSA (USA) currently has the largest collection of information on children with Prader-Willi Syndrome, but some of it is out of date and all data on families lacks essential information that could be crucial information to improve the medical care of our children. Therefore, we are going to improve our database by increasing the size and accuracy of the information.

First Survey

The first survey is the pivotal source for all future surveys. As of August 2007 there were 1,607 people with PWS in the database and it is still growing!  Once your first survey is submitted and processed, you can edit your entry with the second option below.  For those wishing to submit an hard copy, the form is available for download too.  Please fill out this form and keep it up to date.

Second Survey

You must fill in and receive confirmation of your first survey entry (may take up to one month after completion).  With the persons Date of Birth and ID number provided during the first survey entry, you can take part in survey #2.  Please visit this page often and update your information.  Thank you!

Specific Surveys

Mail in forms:

On the first survey, if you answered Yes to:

Additional Information

In a perfect world, PWSA (USA) would have the names and pertinent information needed on all persons with the syndrome. There is power in numbers! If we can acquire a more comprehensive database, National Institutes of Health (NIH) and other funding sources will be more willing to help our children through funding continued research in PWS and obesity!

You do not need to be a member of PWSA (USA) to be included in this collection.

We need your help!

Our survey can be filled in online (see below) or with the downloadable form. Paper forms can be mailed to PWSA(USA) database update, P.O. Box 1114, Niagara Falls, NY 14304-1114.   The mailing address is different for this purpose only.

Why should I fill in this form?

Our children depend on us to find the answers for make their lives medically safer and enable them to have a quality life. We need to be able to prove to researchers that we have children with specific needs and conditions needing research.

The information you provide will not leave PWSA (USA) without your permission except in a personally unidentifiable format .

Examples:

A researcher calls PWSA (USA) planning research on gastro/intestinal problems in people with Prader-Willi Syndrome. PWSA (USA) will notify all the contacts in the database that have persons with gastro/intestinal problems. It will be your option to participate in the research by contacting the researcher.

Another example may be research that is on children with Prader-Willi Syndrome ages 0-5. All appropriate names of families in the database with children ages 0-5 will be contacted by PWSA (USA) either by email or by mail. Again, it is your option to participate or not.

Please be part of this collection. Encourage everyone you know who has a child with Prader-Willi syndrome to participate in this is very important project. Spread the word!

Thanks to the Gerald J. and Dorothy R. Friedman New York Foundation for the donation of the printing and mailing cost of our new life-saving Medical Alert booklet. This booklet will be sent FREE OF COST to all who complete this database form.

updated: 12/26/2012

 

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