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RENIESSPARKIN2's Photo RENIESSPARKIN2 SparkPoints: (722)
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7/28/14 4:34 P

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I got lost in the techno babble in the clinical research, trials and treatments. So that part wasn't much help to me. I'll check out what Sparkers have tried.

Renie

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
3/8/13 4:08 A

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One great way to help put information in doctor's hands about what GP is, what causes it, how it affects us, and what can be done to help/treat/cure (hopefully someday!) is for us to get involved in clinical trials, learn about current research, and read about new treatments being developed. If you come across news about these types of things, post it here so we all can see. Whenever there is any type of breakthrough in treatments or new information is found through trials and research, we can provide this information to our doctors (excluding our GI doctors specializing in GP as they *should* be reading up on this themselves) to help them learn more and consider adjusting our treatment plans.

G-PACT is always involved in so much of this stuff and frequently posts about it on their facebook, so if you aren't checking out their facebook be sure to check it out: www.facebook.com/GPACT

Recently G-PACT posted information on several new clinical trials that are recruiting participants. Instead of posting them each separately, here's a link that will show you what is currently open. If you have time, availability, and wish to help others, see if there is anything you might qualify for and see if you can be included in the study. Some of these look to be nothing more than questionnaires, while others are testing new treatments and new medications. There's even a new trial for domperidone, which is not widely FDA approved for use in the US, but has helped quite a few people around the world (doesn't work for everyone, but does work for some).

www.clinicaltrials.gov/ct2/results?t
er
m=gastroparesis&recr=Open


Be sure to closely read all provided information, as each study has different requirements for causes, symptoms, previous/current treatments, etc. No point in trying to get into a study that you'll be disqualified for because you don't meet the requirements.

If anyone finds new research, treatments, or clinical trials please post them here. Be sure to limit this to medical research, medical journal articles, and other scientific information as online posts from people who are not doctors can skew what information we have as well as spread falsities that are not helpful. We need to have medically verifiable information if we're going to share it with our doctors.

Also note that if you are accepted into a clinical trial you may be put under contract to not share the information with others. We do NOT want you to break that contract. However, if you are allowed to say that you are taking part in a specific trial and would like to let others know to share the experience afterwards or in the off chance you might end up in the same doctor's office, then share it here. Sharing information about the experience of being in a clinical trial (as okayed by the doctors involved) may help lessen the fears of someone who is afraid to get involved.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


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