Tuesday, October 20, 2009

RSDSA Launches Major Study

...on the Natural History and Long-Term Health Effects of CRPS

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... the study website. 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 health-care 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.

This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.

*Western Institutional Review Board

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