International RSD Foundation

"Dedicated To Helping RSD/CRPS Patients Worldwide"

RSD Research

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At the International RSD Foundation, we are committed to helping RSD/CRPS patients with the latest information regarding clinical trials for treatment and research into this very puzzling disease we call RSD/CRPS.

Please check this space for future updates on RSD research.

New CRPS Research Study

6-12-19

Needed: Parents of young people with CRPS to help us with a research study at the University of Bath (UK).

The study involves asking parents of young people (14-25 years) with CRPS and to complete a 20-25 online survey which asks them to think about their child’s future.  We will be able to provide a small token of appreciation for individual’s time.  The study is able to be completed worldwide.  

Please email crpsstories@bath.ac.uk if you would like to take part or just find out more about the study and what is involved.  Thank you.

Investigational Drug Study

If you have Complex Regional Pain Syndrome (CRPS), or any of following symptoms in your hand, arm, leg or foot: severe, non-stop pain, swelling, sensitivity to touch, hair or nail changes, or difficulty moving for less than 2 years, we invite you to learn about a research study of an investigational drug to treat the condition. In this study, researchers will evaluate the safety and efficacy of the investigational drug as treatment for Complex Regional Pain Syndrome (CRPS). If you meet the requirements listed below, follow the screening link to get more information about a clinical trial in your area.

To pre-qualify for this study, you must:

  • Be over 18 years of age

Have any of following symptoms in your hand, arm, leg or foot: swelling, sensitivity to touch, hair or nail changes, or difficulty moving

  • Have had CRPS symptoms for less than two years
  • Have tried 2 or more treatments for CRPS that did not work for you

For more information email CRPSstudy@leapcure.com

 

Clinical Trials

The National Institutes of Health (N I H) does a tremendous amount of research regarding RSD/CRPS. 

The following links below are some new clinical trials that are being conducted by the National Institute of Health (NIH) in Bethesda, MD.

Please click on the links below to view more information regarding these studies.

https://clinicaltrials.gov/ct2/results?term=reflex+sympathetic+dystrophy&Search=Search

https://clinicaltrials.gov/ct2/results?term=complex+regional+pain+syndrome&Search=Search

National Disease Research Interchange (NDRI) 

Contact info:

Sheila Curristin, PhD

Director, Rare Disease Program

The National Disease Research Interchange (NDRI)

8 Penn Center, Suite 800 

1628 JFK Boulevard

Philadelphia, PA 19103

Phone: 1-800-222-NDRI (6374)   

Phone: 215-557-7361 Ext: 232

www.ndriresource.org 

In, July of 2008, I was contacted by The National Disease Research Interchange (NDRI) in Philadelphia, PA. The NDRI is involved in doing tissue research for rare disease such as Reflex Sympathetic Dystrophy (RSD).

The NDRI is looking for people to make tissue donations. If you would like you can make a donation when you have surgery or you can make arrangements beforehand, to donate your tissue at the time of your death.

I feel that making a tissue donation is a very import step to help finding a cure for RSD. In fact, I had surgery to amputate my left leg on August 25, 2008 and I had made the decision to donate my tissue to The NDRI to help with their ongoing research to help finding a cure for RSD.

Eric

For more information please visit the National Disease Research Interchange (NDRI) website site at:   

www.ndriresource.org