Welcome to the CRPS Long-Term Health Survey

What is CRPS?
CRPS stands for Complex Regional Pain Syndrome, commonly known as Reflex Sympathetic Dystrophy. CRPS is a painful disease that occurs after accidental injury or after surgery. CRPS can go away without treatment or it can last a long time in spite of treatment. This survey is part of a long-term research study on the course of CRPS and its effects on a person’s health and wellness.

Who should take part in this research study?
If your doctor has told you that you have CRPS, you may participate in the research and become a “study subject.”

If you have not received a diagnosis of CRPS, or if you think you might have the disease, talk to your doctor to be sure.

Who should NOT participate in this research study?
If you have been told that you have some other painful disease, like diabetic neuropathy or herpes or arterial insufficiency, thank you for visiting this website, but you should not become a study subject.

What do I get from being a study subject?
You will have the satisfaction of knowing that you are contributing to our knowledge of CRPS. This may help others in the future. The information that you provide in your answers to study questions will not be used to recommend treatment for you. However, answering the study questions may help you to organize your thoughts about your CRPS and your general health in ways that will make your treatment easier and more effective.

What do I have to do to be a study subject?

To become a study subject you will:

  1. Learn about the study, ask questions if you want, and be informed about the study and what it means to be a study subject,
  2.  Consent to the collection, storage and study of your personal health information that you will provide when you answer questions in the survey each year, all done in strict confidence,
  3. Agree to answer the questions in the survey once a year for up to 20 years, or for as long as you can,
  4. Agree to provide other health records, if asked, and
  5. Permit a member of the study staff to contact you, if needed, to help you answer questions in the survey.
There are 3 steps to being a study subject:
  1. Give informed consent,
  2. Register as a study subject, and
  3. Answer the questions in the study survey.