CRPS MEDICATION STUDY BEGINS March 31, 2015 !

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CRPS MEDICATION STUDY BEGINS! 
Who Qualifies?
– IF YOU ARE OVER 18- HAVE CRPS TYPE 1- AND WOULD BE INTERESTED IN TAKING PART IN A FREE STUDY VISIT THIS WEBSITE

 www.studyCRPSnow.comAND LEARN MORE ABOUT THE PRE-SCREENING PROCESS AND DISCOVER IF YOU ARE ELIGIBLE. There are STUDY locations all across the United States. When you visit the website simply type in YOUR phone number and if there is a STUDY CENTER near you, you will be directly connected to them to begin the pre-screening process. More sites have been added since the first patients began on April 30, 2015. I know of several more that were added just in the last couple of weeks. Please check back every few weeks to see if one has opened near you. You can also expand your radios outward (outside the 100 miles that is the “set milage) in the call center if you are willing to do the traveling (see number 3 below). As of AUGUST 1st. they still needed a few more people. If you have not called, please call and try to get in. If you have called before don’t hesitate to try calling again and see if any new centers have been added. I believe at least one new study center will be added in the Little Rock, Arkansas area in August for instance. Others have come on line in the last month and will continue to do so. If you are a medical clinic,especially one who has worked with INC RESEARCH before, contact them to see about getting involved in this study!This is a BIG study being conducted all across the United States and we need everyone’s help in getting the word out about it. PLEASE help with this, put a notice on your pages, tweet, re-tweet, whatever you have to do. Send them directly to our cover page www.RSDHope.org  so they can learn all about the study details, you can send them to the www.studyCRPSnow.com address, either one will work. DON’T SEE A STUDY SITE NEAR YOU? 1) More Study Sites will be added in the coming months so check back again. More have been added since April already!2) You can call their Toll-Free phone line; 1-888-641-49613) You can also go to the map on their website and see where the other sites are located around the country. For instance, there might not be one within 100 miles of your current location but maybe there is one 150 or 250 miles away and you are willing to travel that far to be included. If so, locate the study center on the map and contact the site directly to see if you may qualify. WHAT IF I DON’T HAVE “CRPS TYPE ONE” BUT HAVE BEEN DIAGNOSED WITH “RSD” INSTEAD? A few patients are confused by the terminology here, perhaps because their Doctor diagnosed them with RSD instead of CRPS Type I. Well, GOOD NEWS!   CRPS TYPE 1 IS WHAT USED TO BE CALLED RSDS!  CRPS Type I = RSD.CRPS Type 2 on the other hand, used to be called Causalgia. This study is only for those patients with CRPS Type 1. Nearly all Physicians in the United States have caught up to the terminology that changed decades ago but a few still may use the older terminology of RSDS. For more information on the difference between thesetwo types OF CRPS CLICK HERE or visit Keiths blog HERE and scroll down to the entry for March 16, 2014. If you have a diagnosis of RSD do not let that prevent you from applying for the study. Talk to the Drs. involved in the study and let them make the determination. 
Please do not email or call American RSDHope for information about the study as we do not have any more information than we are sharing here. Also, do not discuss details of the study with others please. If

 you are interested in participating in the study you must go to the study website: www.studyCRPSnow.com or call the toll-free number above, in order to learn more.We, in the CRPS Community, are excited. This is the first step in what should be a very exciting year. Please pass the word so we can fill this study up as soon as possible and get the results back. Send them this website address  http://www.rsdhope.org/crps-medication-study-2015.html or send them the address or phone number for the study directly.

WHEN I CALLED THEY SAID I DIDN’T QUALIFY FOR THE STUDY What if I don’t qualify? Will I still be able to get the medication when it is released to the general public? Like any other medication once the studies are completed and the FDA completes its’ review the medication gets released into the marketplace. Neridronate is on the FDA fast track so the process will be much quicker than the average medication review. Once it is released to the marketplace Drs. will be able to prescribe it to their CRPS Type 1 patients as they see fit, like any other medication. If the medication performs as hoped and Neridronate work as well in the United States as it performed overseas we will be thrilled as it went over like gangbusters there!These types of studies will benefit all CRPS patients once so help us get the word out and maybe one day everyone can be pain free! Type 1 patients in the next few years, Type 2 patients after that! WHAT IF I GET INTO THE STUDY? CAN I SHARE HOW I AM DOING WITH MY FAMILY AND FRIENDS?If you are approved for the study and become one of the participants PLEASE follow all of the rules regarding privacy! It is a blind study, meaning that the patients don’t know if they are on the new medication or a placebo. You should also be told by the medical professionals involved in the study not to share how you are doing throughout the study with anyone but them. In other words, do not go on-line and keep everyone updated on how you are doing as this blows the “blind” part of the study. There will be plenty of time in the months and years to come to share with everyone how it felt to be part of the study. Otherwise you ruin the results of the study for your center. They might even have to delete all of your information from the study! QUESTIONS? NUMBERS? If anyone has any questions about the study contact the number above. if you cannot get help that way contact American RSDHope here and we will do all we can to help you. American RSDHope, with the help of everyone who has been through our website and Facebook pages, as well as the website and Facebook pages of Howard Black, has sent over 20,000 patients through the phone lines to see if they qualify for the study. The criteria are pretty narrow we know but they have to be right now, for the initial study. Once the study is over and we get the results we anticipate, and the medication is approved though it will be made available for everyone. That is our goal! 
Thank you in advance to everyone who is helping us get the word out!

From all of us at American RSDHope !