onevoice Transparency Statement and Frequently Asked Questions - making our onevoice crystal clear | DuchenneXchange

Q: Is DuchenneXchange unique in the Duchenne community? 

A: Yes, it is. It is a one-of-a-kind, one-stop shop, digital Duchenne resource. While there are Facebook groups focused on Duchenne, they lack many features of the DuchenneXchange platform, including social interaction in a positively charged community, expertly curated content on a variety of Duchenne-specific topics, and privacy and data sharing protections that Facebook does not provide. 

DuchenneXchange is a place where families can unite around vetted content and collaborative interactions, as we all search for improved care and treatment options. 

 

Q: Is there a registration fee for members?  

A: No. Participation in the community is free! DuchenneXchange was created to provide members with a safe, inclusive, collaborative community in which to learn from expertly curated content and each other. 

 

Q: If there is no registration fee, how does the platform make money?  

A: The platform does not make money. There are no advertising or user fees. DuchenneXchange was launched by CureDuchenne, in collaboration with Duchenne thought leaders and patient advocacy groups, on behalf of the Duchenne community. The platform has been made possible through the generous support of sponsors. While sponsors help make this community possible, they are not content influencers. They are external participants that will receive analytical reports to better understand the most important issues in the community.  

For more details on how the sponsors engage with DuchenneXchange, see the platform’s Industry Center. 

 

Q: How is DuchenneXchange ensuring privacy protection for members and addressing data sharing of its member information? 

A: Trust is critical for our community members, so we employ HIPAA/HITECH technologies to protect your data; employing hardened encryption configuration, an intrusion detection system, login and access tracking, and advanced security appliances. The platform is hosted by the global leader in cloud computing and protection, with 24/7 monitoring and immediate response. 

On DuchenneXchange you can choose to be private or identifiable. As individuals voluntarily post questions, access information, and complete profiles, polls and surveys, we hold onto that information, separate from any identifiable information entrusted to us. Data analytics people do have access to the anonymized data, stripped of all personally identifiable information. By pooling anonymized data, we can gain and share insights that can impact many aspects of developing treatments for rare diseases—from influencing clinical trial design to better understanding the patient journey, and even correlating experiences among different rare diseases. 

 

Q: Why do I need to register? Why can’t I access this information without providing my email address?  

A: Much of the content is available on DuchenneXchange without having to register. However, to get the most from the platform and reveal features that are not available to those who do not register, it is highly recommended that you register. The registration process is quick and easy and allows us to provide members with new information, such as clinical trials. It also allows us to provide you with opt-in notifications for news that is relevant to you. As more members join DuchenneXchange and interact with each other, the platform grows with important content. 

 

Q: Do sponsors receive member data information?  

A: The only personal data collected on the site is that which is provided by you, including: user name (does not have to be a real name), email address, self-identified role in the community, and zip code. This information will only be shared with sponsors upon request through CureDuchenne and only after it has been de-identified.  

By way of example, Sponsors can choose to receive site usage data, such as the most visited clinical trial page or number of views on a video. All site usage data is provided in a cumulative fashion. Community members will never be identified. There is no way a sponsor could contact you or receive your analytical data. 

 

Q: Who is on the curation and engagement councils and what are their roles?   

A: Council members have been selected for their expertise and thought leadership in the Duchenne community. To ensure that all voices in the community are heard, the councils include experts in research, healthcare, caregiving, and patient advocacy. Members of these different groups come together to share news and best practices on living with Duchenne.   

DuchenneXchange council positions are typically 1-year engagements, though we do not impose a term limit. We hope to have many new members join on a periodic basis. If you have an interest in becoming a council member, please click on “Contact Us” and let us know!  

Our mission is to make DuchenneXchange as collaborative, empowering, educational, and engaging as possible with the latest news and information about Duchenne, and we need your active participation to achieve this. 

 

Q: Is sponsored content clearly identified as such for transparency reasons? 

A:  Yes. We believe in being fully transparent. Sponsors will be listed on the landing page under “Our Sponsors”. Sponsors do not have a say in content that is curated in the platform, beyond that which they contribute and appears under their banner in the Industry Center. We value our sponsors and believe in the power of collaboration, which includes all players in Duchenne. What is beneficial for members is that the most current, meaningful, and validated information about Duchenne is in one place. All content (even the industry contributed information) goes through our curation process and must meet quality and content standards. We augment our own internal review process with our council members who oversee the process and can provide expert opinion on the information ultimately shared with the community. This is part of our promise to bring members the best evidence-based, peer-reviewed information available. However, any member can share their experiences via the social aspect of the community and offer advice to other members, which is overseen, but not regulated. The only exception to this would be that members are asked to adhere to the social community’s ethics and behavior guidelines and to avoid disparaging, hurtful, and inflammatory comments. Please see our Terms of Use for more details.

Last Updated: July 19, 2018
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