You may be thinking, “An informed consent document? No way do I want to read one of those!” But you can demonstrate the power of our community and help us write a more understandable, responsible informed consent for our community’s registry.
As many of you know, DuchenneConnect was awarded funding from PCORI, the Patient-Centered Outcomes Research Institute, to join PCORnet, a large network that aims to improve the speed and efficiency of research. This exciting program is bringing many positive changes to DuchenneConnect, and allowing us to continue to be a model for rare disease registries.
One of our goals as part of the PCORnet project is revising our informed consent to ensure that, as we grow, patients and families have a solid understanding of the purpose of the registry, what’s involved in participating, the potential benefits and risks, and how the data is used. We are collaborating with the bioethics team at Geisinger Health System to revise our consent.
Tell us what you think about the revised consent. There are some topics and some specific language we have to include to meet requirements for human subjects protections, but we must make it meaningful for our registry users. We’ll take your input, together with input from others in the Duchenne and Becker muscular dystrophy community, to revamp and finalize the consent.
Please answer by the end of the day on Sunday, September 7th.
Our best to you and your family,
The DuchenneConnect Team
Holly Peay, Director of DuchenneConnect, PPMD Vice President of Education and Outreach
Ann Martin and Ann Lucas, Certified Genetic Counselors and DuchenneConnect Coordinators
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