The CAH Research Project is a community-driven research initiative. We are asking the CAH community to partner with us to include their voice in helping to set our research objectives.
The CAH Patient Registry collects health-related information from people with CAH, but the CAH community also has questions - and the CAH Patient Registry is a way for your questions to be heard. During the period of March – May 2018, we will be collecting submissions from the community. We will then work with a collaborative team of community members, including members of adults with CAH, parents and relatives of individuals with CAH,
researchers, and clinicians, to narrow the list down to 10-20 feasible research questions. In August 2018, we will ask the CAH community to vote for the questions that would be the most relevant and informative if they were answered. It can take two to three years to answer a research question, so we want to ensure we are answering the most pressing questions first.
Once a research question has been selected for study based on votes from the community, we will assemble a multidisciplinary research team to develop a study design and analysis plan, conduct the analyses, and develop materials for dissemination. Timing will depend on the complexity of the chosen question, resources, and personnel needed.