The National Institutes of Health (NIH) have sponsored the development of a national registry of patients with primary immune deficiencies. The efforts to develop the infrastructure have taken place over the last decade and a number of studies critically important for the care of patients have been published.
YOU CAN HELP!
Participation will help us understand what happens to patients with different kinds of treatment and what types of problems patients are having.
If you are interested in participating, there are several things you can do:
Fill out the QUALITY OF LIFE SURVEY on how you feel you are doing (for kids too!).
- If you are interested in filling out the Quality of Life Survey please click here.
o Please click on Register and create a user name and password, then follow the prompts on how to fill out the form.
- There is a form requesting certain medical information for your physician to fill out. If you do not see your specific immune deficiency, please let us know!
- For physicians who have large numbers of patients, USIDNET will provide assistance in filling out the forms and becoming a registered contributor. You can download the form and start the process!
- If your physician sees a smaller numbers of patients, you can sign a release form and request your medical information be copied so you can send it in to the registry yourself. Physicians who have small numbers of patients can still register and become a member. There are certain benefits for physician contributors.
We also want to hear from you about questions you have regarding your disease. These will form the basis for some research studies. This registry serves both patients and physicians and it is important that it provide meaningful answers to your questions.
To ask a question or give us feedback, call 866-939-7568 or email Contact@USIDNET.org.