Community Research Priorities

These are the most pressing research issues facing hydrocephalus. These priorities are unique in that all relevant stakeholders contributed to the process in a scientifically rigorous manner. HA is using these rankings to guide the development of our research programs and will actively encourage the healthcare and scientific community to utilize this list to guide their own work. We have already held a workshop which set out to reinvigorate the conversation of quality of life in our research community. 

Furthermore, having these priorities back by a validated methodology will be useful in HA’s advocacy, awareness, education, and fundraising efforts.

What does this mean for those living with hydrocephalus?
Advocacy, awareness, education, fundraising. Research will inform treatment and guidance for quality of life.

What does this mean for scientists?
We will prioritize funding research in these areas, fundraising focus.

What does this mean for physicians?
Once research is complete—this will lead to more understanding of treatment and quality of life, more physician awareness of hydrocephalus signs in adults.

While prioritization is critical to determining a plan of attack, we want to emphasize that each statement in this list is a priority which needs to be addressed. Out of the thousands of statements submitted, these were grouped and ranked into the highest spots. Rank 10-20 are not on the bottom, they in fact made it to our top priorities list! As many of these priorities can be addressed in parallel, we will be looking at the list as a whole in addition to the rankings.

1. Develop new treatments that do not require brain surgery to manage hydrocephalus
2. Develop new one-time treatments to manage hydrocephalus (i.e. permanent treatments that do not require additional interventions)
3. Identifying the causes and processes that lead to hydrocephalus (e.g. genetic influences, inflammation)
4. Develop ways to monitor shunt function and detect shunt malfunction non-invasively and/or outside of the hospital
5. Improve shunt components and surgical techniques to prevent shunt blockages and mechanical failure (e.g. broken valve, disconnected tubing, broken tubing)
6. Develop methods to non-invasively or less-invasively unblock shunts
7. Improve shunt designs and surgical techniques to enable less or non-invasive shunt placement and shunt revisions
8. Develop ways to prevent the development of hydrocephalus
9. Develop a better understanding of the symptoms patients experience when their shunt is failing
10. Improve ways of diagnosing and screening for hydrocephalus to allow for earlier detection of the condition
11. Determine which treatment strategy will be most effective for each patient by comparing clinical protocols and treatment options (e.g. shunt vs. ETV, programmable vs. non-programmable shunts)
12. Develop therapies (e.g. stems cells, cellular regeneration) to repair brain damage for people affected by hydrocephalus
13. Determine how to improve patient access to doctors and hospitals that have expertise in hydrocephalus
14. Improve our understanding and develop ways to reduce the emotional and psychological challenges (e.g. stress, anxiety, and depression) of living with hydrocephalus
15. Improve our understanding and develop ways to reduce headaches and migraines related to hydrocephalus and hydrocephalus treatments
16. Improve our understanding and develop ways to reduce impairments in attention, learning, memory, and problem solving related to hydrocephalus
17. Improve our understanding and develop ways to restore physical function and motor control (e.g. walking, balance, and urinary continence) in people with hydrocephalus
18. Determine how to improve coordinated care across medical specialties (e.g. neurosurgery, neurology, cognitive therapy, physical therapy, etc.) for people with hydrocephalus
19. Determine how to improve a patient's transition from pediatric to adult medical specialists (doctors)
20. Develop ways to accurately determine if a patient would benefit from hydrocephalus treatment, such as shunt, prior to surgery