The RSDSA has just announced the following:
RSDSA Launches Major Study on the Natural History and Long-Term Health Effects of CRPS http://www.rsds.org/3/research/RSDSAStudy_1019_197.html
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) launched an Internet-based study entitled Long-Term Health Effects of CRPS: A 20 year Cross-sectional and Longitudinal, Observational Cohort Study, funded by a grant from the Brodsky Family Foundation. The study design is patterned after the registry database conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS) Project, which has 34,000 participants. A previous Internet-based survey studied 1,300 people with CRPS, of whom about 1,000 participated in a follow-up questionnaire. RSDSA hopes that the new study will attract many more participants who will share their experience with CRPS for the benefit of all.
Anyone with the diagnosis of CRPS Types I and II can participate via a link on RSDSA’s website, www.rsds.org or from the study website (www.crpssurvey.org). Potential participants, who are not familiar or comfortable with Internet-based communication, can contact the study’s Project Manager to obtain paper forms for registration, consent and enrollment. Participation is voluntary and anyone can withdraw from the study whenever they wish. Each year, the participants will be asked to answer questions about their health and healthcare utilization, treatment, and how CRPS is affecting their health and wellness. Participants do not need to submit medical records to register for the study, but we may request medical records to confirm information in the database. All questionnaires and records are confidential and securely held according to HIPAA and WIRB provisions.
As set forth in the release, these longitudinal (over time) can be highly significant, where individual responses are categorized and an anonymous "you" is then assigned values on any number of variables built into the study. The trick is that - say 10 years down the line - researchers can look at the variables over time and test for relationships that were not even contemplated at the time the study was designed.
The homepage for the study does a nice job of laying out what's required:
To become a study subject you will:http://www.crpssurvey.org/faq.html
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.
The last item is particularly important for people with CRPS in their hands: if you're not in a position to type, you can call in at 626-379-0578 and make arrangements for a staff member to call you.
We should all really make an effort to participate in this one.