Help the Research Effort for Children with Migraine (Closed)
Did you know that the lack of research and treatment options for kids is a problem for children with migraine?
Children with migraine are often left out
At Migraine.com, we have heard a lot about the challenges of children and adolescents living with migraine. From our Migraine In America 2019 survey, we know that 7 in 10 adults who had migraine as a child report that they did not receive effective treatment at that time. They also reported that they were often viewed as “faking" their condition by others, compounding their challenges with treatment.
One way to overcome these barriers is to increase the number of migraine studies conducted with children and adolescents. The more attention, education, and research highlighting the special challenges of kids with migraine will help lead to more effective treatments and improve their quality of life.
How you can help
You can be part of helping to design more inclusive research and ensuring that there are studies that focus on pediatric and adolescent migraine!
Researchers at UCSF Benioff Children’s Hospital are preparing a research study that will be submitted to the Patient-Centered Outcomes Research Institute (PCORI) for consideration. PCORI is part of a national effort to fund research that invites patients to be part of the planning of research efforts from the beginning, not just as traditional study participants.
As part of the UCSF proposal, the research team is looking to get input from children and adolescents with migraine and their caregivers about what kinds of “outcome" measures YOU value for pediatric migraine research. You can contribute to this important effort and have your voice heard by completing the brief survey, now closed.
This initial survey will be part of a larger effort to make the measures that are used in clinical trials more meaningful to the everyday lives of people living with migraine--in this case children and adolescents with migraine and their caregivers. If you have any questions or other suggestions for the researchers that are not included in the preliminary survey questions, you can contact the research team.
When it comes to planning vacations or other events where travel is required, how much does migraine factor into your decision-making?