Welcome to the Poland Syndrome Community Register Page.
The Poland Syndrome Community Register has been in the making for ten years. It is based on a tried and tested model adopted by the Italian Poland Syndrome Association to generate scientific activity into Poland Syndrome.
This register is how we are going to finally get all our voices heard and improve the diagnosis and treatment for Poland Syndrome.
In signing up to this register and completing the surveys you are part of the creation and ongoing development of a Poland Syndrome specific international data resource which benefits the Poland Syndrome Community by:
- Increasing understanding of Poland Syndrome
- Encouraging an efficient and timely diagnosis
- Enabling progress in research and clinical trials
- Facilitate the development of treatment for Poland Syndrome
Hear from Nan, Becca, Kim, Richard, Lewis, Gift, Gene, Stuart, Manuel, Lily, Sydney, Rupinder, Trudie and Ericka, as they share their experiences of living with Poland Syndrome and why they think the Poland Syndrome Community Register is important.
Questions and Answers about the Poland Syndrome Community Register
Q1. What is the Register?
Q2. Why are Registers needed in clinical research?
Q3. Who can participate in this Register?
Anyone with a physician-confirmed diagnosis of Poland Syndrome or parents/caregivers of someone with a physician confirmed diagnosis of Poland Syndrome.