If you’re like many gastroparesis patients, when you first got ill you visited your doctor or an ER trying to find out what was wrong and come up with a plan to feel better. Unfortunately, even though your symptoms may have pointed to gastroparesis, doctors don’t normally think of it. Those that do might ask if you’re diabetic and, if you say no, refuse to consider gastroparesis as the culprit.
Research is ongoing that should help doctors better understand gastroparesis. The problem is that these studies are limited geographically to certain motility doctors or clinics. If you’re not seen in one of these places, you can’t participate in the research.
G-PACT is trying to change all that with our comprehensive Gastroparesis Registry. Developed in conjunction with Genetic Alliance, our Registry has been collecting patient data for over 2 years now. The study is IRB approved, which means that an Institutional Review Board reviews and monitors our research on a regular basis. In addition, all G-PACT personnel involved with the Registry have completed the National Institute of Health course on Protecting Human Research Participants. The Registry is completed online and can be done from anywhere there is a computer. We have participants from all over the world!
Here is just one thing, of so many, that the Registry has shown us. You know that tendency for doctors to assume Gastroparesis is primarily connected to diabetes? Well, the Registry has shown that only 6% of participants suffer from Type 1 diabetes and 14% suffer from Type 2 diabetes. Being able to share just that one piece of information with gastroenterologists could dramatically change how doctors think about gastroparesis. Maybe we could actually be diagnosed before we suffer for weeks, months, or even years!
The Registry will be collecting information far into the future. We are currently working with a data analysis company to pull the information together so we can share it with doctors and other researchers. But we need as much data as we can collect to make sure we’re fairly and accurately representing the gastroparesis patient population.
Won’t you take the time to complete your Registry information? There are a lot of questions, but being thorough is important. It’s not mobile friendly right now, so you do need a computer. The privacy settings you must set up during registration are lengthy, but they are there to make sure your identity is protected.
Please, give us an hour of your time so we can tell your story to the people who might find better treatments and, ultimately, a cure. https://www.g-pact.org/registry