Morgellons patients…please complete this brief survey!
We are excited to announce that there is now a functional, worldwide Morgellons patient registry. This new registry is named Morgellons Global Data, and is accessible by clicking www.morgellonsglobaldata.com.
Participation in this patient registry will enable us to have an accurate collection of patient data, symptoms, and the impact that Morgellons has had on their lives, both socially and economically. This data is vital in getting Morgellons recognized as a real and devastating condition.
This survey was developed through Alta Voice, a company that specializes in Patient Insight Networks, which are known as PIN’s. A PIN is ideal for collecting, analyzing and sharing reported health data. Alta Voice has developed over 400 unique disease registries. The company works with the NIH, advocacy organizations, academic researchers, pharmaceutical developers, and biotech companies. Those individuals can view and analyze the de-identified data provided by patients to develop research, clinical trials, and new drugs. The website link for Alta Voice is altavoice.com, if you would like to view their other patient insight networks. Many of these PIN’s have had amazing success with their registry.
A big concern is always patient privacy. You will be given the opportunity to share or not share your own data. If you decide to share your data, please know that it is all de-identified. Anyone that accesses the registry (researchers, drug companies, etc.) will never be able to see your name or personal information. They will only see your answers to the questions. Of course, it is best for all Morgellons patients to share your data because that is the purpose of the registry.
After you register with a username and a password, you will be directed to three different surveys. The first is the actual Morgellons survey. Then there is a General Health and a Family Health survey. They are all short and easy to understand.
Please, for the sake of all Morgellons patients, complete these surveys! Share the link and any information with every patient you know. We are all in this together and this is an important step that WILL help us all.