PPMD Community

New Research & Clinical Trial Tools on PPMD's DuchenneConnect!

We are excited to announce three new features now available on PPMD's DuchenneConnect! These tools are meant to help you in your journey as you gather information around potential research studies and potential new exon skipping therapies.  

Keep Your DuchenneConnect Profile Updated


Before we introduce you to these exciting new tools, we want to remind you how critical it is to keep your DuchenneConnect profile updated. And if you’re not registered in DuchenneConnect, make today the day!

One of DuchenneConnect’s most important roles is partnering directly with researchers to help them recruit for trials. If it looks like you may be a good fit for a trial (based on the answers to your medical history surveys in DuchenneConnect), you will receive an email from us describing the trial and how to get more information. 

Receiving an email from us about a trial isn’t a guarantee that you will qualify for that trial, but it does mean that you may meet some of the main inclusion criteria. As always, if you have questions about any trial we encourage you to contact the coordinator for that study or reach out to us at DuchenneConnect.

Meet the New Tools!


Here is a brief summary of our three new tools that we hope will make the process of finding information about clinical trials as easy as possible:

  1. Research FAQ Search

    The first tool provides a new way to search our Research FAQ’s housed on DuchenneConnect. The Research FAQ’s are family-friendly summaries of actively recruiting clinical trials, research studies, and pre-clinical research that is soon to be in clinical trial.

    In the past the Research FAQ’s were displayed alphabetically. This new search function allows you to search by categories such as ambulation status or corticosteroid status.   

  2. Clinical Trial Finder

    The second new tool is the Trial Finder tool available on our homepage. The Antidote Trial Finder tool asks a few simple questions and then lists potential trials that might be of interest. This takes a lot of the homework out of the search for potential trials for yourself or your loved one. Antidote’s tool also allows you to sign up for emails on our partner’s, Antidote, website for trial updates. Keep in mind that if you sign up for updates from Antidote this is separate from DuchenneConnect emails.


    While there are similarities between the Research FAQ search tool and the Trial Finder tool, there are some differences which the chart below highlights.



  3. Duchenne Deletion Tool

    And finally, we are also excited to announce the Duchenne Deletion tool available also on our homepage. With this tool, you can input your/your child’s deletion and then be given information immediately about exon skipping therapy/exon skipping trials. Currently this tool is designed only for mutations which are deletions. 


Your Number One Resource

While we believe these tools will help alleviate some of the overwhelming research parents and people with Duchenne undertake in an effort to research what trials they may qualify for, PPMD's DuchenneConnect team is still your number one resource to navigate this complex world.

If you have questions or concerns, please don’t hesitate to contact us via email at coordinator@duchenneconnect.org or phone at 888-520-8675.  You are all important to us and by being a member of DuchenneConnect and keeping your information updated, you are helping in our fight to end Duchenne.    

If you haven’t joined DuchenneConnect, we encourage you to do so! We welcome all people with Duchenne, Becker and women and girls who are carriers.  



Views: 425

Comment

You need to be a member of PPMD Community to add comments!

Join PPMD Community

© 2017   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service