Did you know that even if you are not interested in being in a clinical trial, DuchenneConnect is still a powerful tool that is useful for people with Duchenne and Becker? That’s right! DuchenneConnect is the largest, most robust patient report registry for Duchenne and Becker in the United States. And we do so much more than just notify you of clinical trials….
We are excited to launch our new DuchenneConnect video which highlights the many reasons someone should consider joining DuchenneConnect, even if they are not interested in being in a clinical trial. If you haven’t joined the Registry, watch our new video to hear about some of the benefits the Registry can offer you. DuchenneConnect is truly an effective tool in the fight to end Duchenne. Joining DuchenneConnect is something you can do from the comfort of your home or even from your mobile device, no matter where you are.
Here are some of the many reasons why you should join DuchenneConnect:
1. You will have access to resources to help you obtain better clinical care
When you join the Registry and answer survey questions, we will have our coordinators review your account. For each Registrant we make sure that certain questions and key pieces of data are entered. This makes our Registry data the best that it can be. Once we have reviewed your account, we will email you a copy of the most current clinical care guidelines. This is a document that you can share with your doctor to make sure your child is receiving the best care possible. In addition, for many of our surveys, we put valuable clinical information or links to good tips or educational material at the end of the survey.
2. You can compare your answers to survey questions to others people’s answers
On the website you can compare your answers to survey questions with everyone else who has answered that question. To see this information, once you are logged into your account, select the tab “View Data.” There you will find each survey listed with the main sections of each survey listed below the survey title. To see individual questions, click on any section of a survey and then the questions and answers in the survey section will be displayed. If you answered this survey, your answer will be displayed in yellow along with the percentage of people who also answered this way.
3. You can have your medical records in one place
Another great feature on DuchenneConnect is the ability for you have your medical records in one place that is safe and easy to access from anywhere.
There are a few ways for you to get these records into your account. The first way is to upload any records that you may have directly into your account. If you already have an electronic copy of a test such as a genetic test report, you upload this into your account. Once you are logged into your account, go to your profile page and then select “Add” under the Testing Results box. This will bring up the “add an attachment” feature. You can select the type of file the attachment is and then select the file and finally click “Add Document”. Additionally, you can always email (firstname.lastname@example.org) or fax (404-935-0636) copies of any records directly to us and we will add them to your account for you.
And finally we are very excited to tell you that we will be launching a new project soon that will allow you to import records from your healthcare provider’s patient portal directly into your DuchenneConnect account. This will allow you to have everything from any and all patient portals in one central place. Stay tuned for updates on this project.
4. You have access to genetic counselors
You don’t often have direct and free access to genetic services, but you do with DuchenneConnect.
We have three board-certified genetic counselors that are available to you. If you have questions about past or current genetic test results, reproductive options, care concerns, carrier testing, potential therapeutics, or clinical trials, we are here for you. You can reach us by either calling (888-520-8675) or emailing (email@example.com).
Again, we are here for you so please don’t hesitate to reach out!
5. Your data helps improve Clinical Care
Clinicians who are interested in improving care, work with us and use our data to study specific questions they have regarding issues in Duchenne. This means any data you give us can help the medical community improve care for everyone! That happens even if you never sign up for a clinical trial.
We currently are working with several clinicians on different areas to find out more about specific clinical questions. One area of care that we are interested in is pain and how that affects the lives of people with Duchenne and Becker. We are just beginning to collect this data and we hope to have some information for everyone soon about what we learn.
6. Your data helps with planning clinical trials
Researchers and industry use our data to better plan studies in order to be more efficient. This is critical as funding and resources for research is limited. Maximizing the efficiency of studies is critical and your data can help do this!
Your story, your data is important.
You have the power to help us in the fight to end Duchenne. Please join today at DuchenneConnect.org!