Please participate in study.

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Bobbie
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Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Please participate in study.

Postby Bobbie » Mon Sep 18, 2017 3:57 pm

Here is our chance to do something positive about c diff.

Study on the quality of life of patients with CDI in the US
Sent: Mon Sep 18, 2017 3:03 am
From: Lise
Recipient: Bobbie

Dear Bobbie,

My name is Lise and I am working at Da Volterra. It is a French biotechnology company developing an innovative product, DAV132, which aims to prevent the deleterious consequences of antibiotic treatments on the intestinal flora, especially Clostridium difficile infections. You can find more information about DAV132 on our website: http://www.davolterra.com/.

We have very recently started an online-survey to assess CDI patients’ quality of life in order to raise public awareness on the true burden of Clostridium difficile infections. We believe that this is of foremost importance! The link to the survey is https://cdiffsurvey.org/ and it takes about 20 minutes to answers all questions.

We already are being supported by 2 main U.S. associations fighting against C. difficile: the C Diff foundation (https://cdifffoundation.org/) and the Peggy Lillis Foundation (http://peggyfoundation.org/). They shared the link to our survey on their website and helped us reaching 230 participants on the 342 we stated to be necessary in the protocol.

We strongly believe that we share the same commitment to combat C. difficile. If you would like to support our study to better evaluate the true burden of CDI, would it be possible to share our survey on the Support Group? Do you think it would be possible to share it on your homepage or in a relevant topic? This would be so helpful for the study’s progress and appreciate better the burden of C. difficile.

Many thanks for your help,

Best regards,

Lise Lurienne

Lise
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Posts: 6
Joined: Mon Sep 18, 2017 3:55 am

Re: Please participate in study.

Postby Lise » Wed Sep 27, 2017 5:45 am

Many thanks Bobbie for sharing the study on your forum: it has enabled us to reach more than 260 responses today. We are continuing our efforts to attain the number of answers necessary in the study protocol.

We wanted to thank all survey participants. Sharing consequences of this disease on your quality of life is really valuable for us as we rely on this study to raise public awareness of the true burden of Clostridium difficile infections.

We also appreciate to have your feedbacks on the questionnaire itself. Your comments help us better understand your expectations and improve future studies. Some of you found the questions a bit too focused on the physical and psychological consequences post CDI. Actually, in order to get the most accurate answers possible, we decided to ask questions about the disease itself to participants who were currently experiencing C Diff infections. Respondents who experienced an infection in the past answered another questionnaire focusing more on the long-term consequences of the disease.

We look forward to sharing our results in a future publication.

Thanks again for your involvement!

Lise
New User
Posts: 6
Joined: Mon Sep 18, 2017 3:55 am

Re: Please participate in study.

Postby Lise » Thu Nov 02, 2017 10:54 am

Dear C Diff community,

We thank all participants who already responded to the survey. Your time is very valuable for us.

As of today, we lack only 10 responses to complete our study's recruitment. If you have not yet participated and you want to share the consequences of this disease on your quality of life, do not hesitate to fill out the questionnaire at the following link: https://cdiffsurvey.org/

This study will help physicians, healthcare providers and policy makers understand the burden of CDI and to strengthen the need for therapies to combat and prevent CDI.

Again, many thanks for your involvement,

Lise

Lise
New User
Posts: 6
Joined: Mon Sep 18, 2017 3:55 am

Re: Please participate in study.

Postby Lise » Mon Nov 13, 2017 5:09 am

Dear CDiff Community,

We are very pleased to announce you that the recruitment of the survey is completed.

We are now starting analyzing data and we look forward to sharing our results with you in a future publication.

Thank you again for your valuable involvement, this was really helpful!

Lise

Lise
New User
Posts: 6
Joined: Mon Sep 18, 2017 3:55 am

Re: Please participate in study.

Postby Lise » Thu Aug 23, 2018 11:52 am

Dear CDiff Community,

We are very delighted to announce you that a poster summarizing some of the key results of the study will be presented to the American Conference of Gastroenterology in October 2018. The poster is entitled: “Perception of Quality of Life Among People Experiencing or Having Experienced a Clostridium difficile Infection in the United States: Qualitative Review of Respondents Verbatim”.

Of note, it has been accepted and granted two awards: the Presidential Award and the Category Award. The two awards will help put research on CDI patients at the forefront of the gastroenterologists community in the US!

The abstract is available at the following link: https://www.eventscribe.com/2018/ACG/fs ... rID=161259

We are also working on a publication that will present full results of the survey.

We would like again to thank you for your valuable involvement, this was really helpful!

With best regards,

Lise

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Please participate in study.

Postby NanciT » Sat Sep 21, 2019 10:33 am

If you view the bottom of page two, you will find the information they posted from the study. It was completed and they were going to do additional studies in the future


NanciT

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Please participate in study.

Postby Bobbie » Sun Sep 29, 2019 2:55 pm

This study was completed. A number of our posters participated. Thx to all.

I just edited this topic but left the pertinent info,

Lise
New User
Posts: 6
Joined: Mon Sep 18, 2017 3:55 am

Re: Please participate in study.

Postby Lise » Mon Feb 24, 2020 6:18 am

Dear CDiff Community,

As promised, we are very delighted to announce you the publication of full results in a paper entitled: “Perception of quality of life in people experiencing or having experienced a Clostridioides difficile infection: a US population survey”. It is published in the Journal of Patient-Reported Outcomes and it is available at the following link: https://jpro.springeropen.com/track/pdf ... 020-0179-1

We would like again to thank you for your valuable involvement as the survey was only possible with your support.

With our best regards,

Lise

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Please participate in study.

Postby NanciT » Mon Feb 24, 2020 4:23 pm

Thank you so much Lise! I have read through and it is so important to have the factors of what CDI does to those of us even in recovery or years after.

Please tell all who worked on this I appreciate their efforts!

NanciT

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Please participate in study.

Postby Bobbie » Tue Feb 25, 2020 2:56 pm

Lise,
Well done altho wish you had mentioned our site since many participated. We are the first c diff support site. Pls keep in touch re further advances.

Lise
New User
Posts: 6
Joined: Mon Sep 18, 2017 3:55 am

Re: Please participate in study.

Postby Lise » Wed Mar 25, 2020 4:46 pm

Dear Bobbie and Nanci,

Thank you so much for your support. As you can see in the publication, we expressed our gratitude to your support group in the acknowlegment section as we know how helpful you have been in disseminating the survey.

With our best regards,

Lise


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