Rate your Duchenne/Becker care through the Clinic Survey

The MD-CARE Act was signed into law in 2001 and reauthorized in 2008. What’s that got to do with a clinic survey you might ask? The MD-CARE Act was a pivotal moment. In a certain way, it was nearly as important as the identification of the dystrophin gene. The hearing was the first time Duchenne was said out loud in Congress.  Duchenne was on the NIH radar, as well as, CDC. What you might not know about are all the meetings leading up to the passage of that legislation. 


One meeting was with the CDC. It was pretty clear we had NO natural history of Duchenne, other than a study from many years earlier when steroids were not recommended. We had NO information about clinics, only rumors of clinics that had expertise in Duchenne and others less or none. We had NO data and without data, clinical trials are likely to fail (comparing apples to oranges because nothing was standardized) and industry trials only a wish.

 

We walked into that meeting with the Cystic Fibrosis data in hand: rigorous data published annually. Looking at the data we understood optimal care for CF, we understood what the ‘optimal’ clinics looked like in terms of available resources, numbers of patients, and interventions. We knew about the lives of the CF patients, the quality, life span, education, and employment. We knew we needed data to learn about individuals with Duchenne, where care was provided, what care looked like, and what resources were available. And in response to that need, DuchenneConnect was developed. Today, we have more than 2,000 patients registered internationally. We are working globally with TREAT-NMD and closely with Industry.


We need your help if we are to improve care and have the ability to
 provide industry information needed for clinical site selection.

 

The clinic survey is structured to have a clear view about care, about available resources, and to understand your view about what is needed and wanted to improve efficiency. Simple as that. And this will help all of us – patients and families, physicians, healthcare professionals, biotech, and pharma improve healthcare delivery, identify sites for trials, understand your needs, improve interventions, develop clinical studies and trials, and reach our goal…to end Duchenne.  

 

Participation helps all of us.

Click here to participate.

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Staff
Comment by PPMD on October 17, 2011 at 10:16am

Hi Keith & Andrea,


Thanks for your questions!
Pat's traveling right now, so I asked PPMD's Ann Martin if she could help answer your questions. Here's what she says:

 

Keith -- You should complete the survey for the clinic where your son receives the majority of his Duchenne care. Even if you only visit the clinic once or twice a year, if they are coordinating all of your son's care then please complete the survey from their perspective. There is a question that asks how far you have to travel to get to the clinic, so we will know that it is not your local clinic. Please let us know if you have any other questions. And thank you for completing the survey!


Andrea -- Right now we are only collecting data on US clinics, but we hope to open the survey up to Canadian clinics in the future. We will notify you as soon as the survey is open to Canada. Thank you for your interest, and please let us know if you have any questions.

Comment by Andrea Cleary on October 15, 2011 at 8:01am

Can we add the Canadian clinics to the survey (though I realize we are not covered by the MD-Care Act)?

Ours at the Montreal Children's Hospital is great.

Comment by Keith Van Houten on October 14, 2011 at 1:12pm

Pat -from what perspective do we answer the survey?  Related to locally available care, or the care we receive by travelling hundreds (or thousands) of miles to a center of expertise?

The problem with care today isn't that it's not available.  If you have the financial means and capability to travel, you can get state of the art care, in more than one place around the country.  If you can't - you're stuck.

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