Recently, an article was published in Therapeutic Advances in Rare Disease which discusses the role of patient advocacy groups (PAGs) in rare disease research.
Recently, an article was published in Therapeutic Advances in Rare Disease which discusses the role of patient advocacy groups (PAGs) in rare disease research. While the vast majority of PAGs report an interest in research engagement regardless of size, budget, or maturity level, the authors identified a number of barriers to truly patient-centric research efforts.
In order to better understand how to best support collaboration with PAGs in the process of research development, researchers delivered a survey to 159 participants from rare disease PAGs. Based on these responses, research is an important priority for PAGs; particularly among those for ultra-rare diseases.
This interest in taking a more active role in research is only growing, and there are a number of supports available to PAGs to facilitate their participation, such as guidelines for patient engagement in research; PAG leadership development resources; and PAG-specific research funding opportunities. Despite this, groups still face significant challenges when it comes to research collaboration. In particular, PAGs reported a lack of sufficient human and financial resources as a barrier.
The results of this study identify a need for more long-term support for PAGs looking to engage in research. This includes but is not limited to ongoing funding, capacity-building activities, and support for registry data collection. Researchers also point to a need for future research which investigates how racial and ethnic disparities manifest in patient engagement, research involvement, government advocacy, and health outcomes.
Source: Orpha.net.
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