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Are You A Researcher Or Student Who Is Interested In Doing A Study On PWS?

Because we want to spare our families the many questionnaires they are asked to fill out and because we want your research thesis or dissertation to be helpful and relevant to our population, if you want to work with PWSA (USA) on your project you should call me when you are in the idea formation stage. It is important that you get our recommendations prior to going to your IRB for approval. Call in the afternoons. If I am not available for an extended period of time, ask to be connected with Evan Ferrar.

Some current topic ideas that we think would be new and helpful to study on PWS.

1) Families experiences with psychiatric units. We find there are many problems and significant weight gain in psych units. It would be good to document the issues.

2) Aging and PWS. We see signs of early aging but have no documentation.

3) Dealing with the legal system. Many get into legal trouble. Why? How are they handled? How could they be handled better?

4) The new PWS generation -- What are they doing right? Many of our young children are doing so much better than the last generation. We know early intervention and growth hormone have a lot to do with it, but more details would be good to document.

5) How to give adults with PWS a chance at more freedom without risking their lives.

6) School issues with PWS

7) Sensory integration

8) Self injury including rectal and skin picking

9) Specific behavioral management techniques

Janalee Heinemann
Director of Research & Medical Affairs
800-926-4797

edited: 02/09/2012

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