Go Back   NeuroTalk Support Groups > Health Conditions M - Z > Reflex Sympathetic Dystrophy (RSD and CRPS)

Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

you are needed for an important study by the RSDSA on the long-term effects of CRPS

Reply
Thread Tools Display Modes
Unread 02-21-2011, 07:37 AM   #1
fmichael
Senior Member
 
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
Thumbs up you are needed for an important study by the RSDSA on the long-term effects of CRPS

The RSDSA has just announced the following:
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 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.
http://www.rsds.org/3/research/RSDSAStudy_1019_197.html

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:

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.
http://www.crpssurvey.org/faq.html

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.

Mike
fmichael is offline   Reply With Quote
"Thanks for this!" says:
Imahotep (02-22-2011)
Unread 02-21-2011, 08:44 PM   #2
pooh_ac
Member
 
pooh_ac's Avatar
 
Join Date: Apr 2010
Location: nowhere nebraska
Posts: 589
My Mood:
Default

Quote:
Originally Posted by fmichael View Post
The RSDSA has just announced the following:
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 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.
http://www.rsds.org/3/research/RSDSAStudy_1019_197.html

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:

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.
http://www.crpssurvey.org/faq.html

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.

Mike
Mike, I am participating in this study (at least I think I am) I signed up several months ago and did the survey at that time. I think it is VERY important that we all give all the input that we can
pooh_ac is offline   Reply With Quote
"Thanks for this!" says:
fmichael (02-21-2011)
Unread 02-22-2011, 08:43 AM   #3
Patti_Christmas
Member
 
Patti_Christmas's Avatar
 
Join Date: Feb 2011
Location: Eaton Rapids, MI
Posts: 146
My Mood:
Default

Thank you for the links! I filled out an application last night, so who knows. I think it is a very important thing even if not selected because the information they gathered will be very helpful.
Patti_Christmas is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Long Term Side Effects Of Neurontin?? lookingup58 Epilepsy 26 06-24-2013 01:40 AM
Long-term Effects of Stereotyping NewsBot Health News Headlines 0 08-11-2010 08:30 AM
Effects from long term interferon use? AfterMyNap Multiple Sclerosis 29 02-25-2008 08:32 PM
long term effects Cedar Epilepsy 3 09-30-2007 06:09 PM
Long term Parkinson's effects therunningdan Parkinson's Disease 2 11-14-2006 04:17 PM


All times are GMT -5. The time now is 11:02 AM.
Brought to you by the fine folks who publish mental health and psychology information at Psych CentralMental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors • Community GuidelinesTerms of UsePrivacy Policy
NeuroTalk Archives