Community Research Priorities

We listened closely to the needs of our community over the last two years by conducting a formal study using the James Lind Alliance (JLA) methodology that included patients, family members, scientists and physicians. This study has been published in the Journal of Neurosurgery.

With input from almost 1,500 people over the course of two surveys and a workshop we have developed our Top 20 Community Research Priorities. 

These priorities have been condensed into five areas of focus where the Hydrocephalus Association is best poised for highest impact. These will be the guiding beacons for HA's actions influencing our actions in research, advocacy, education, fundraising, and awareness.

Five Areas of Focus

Develop non-invasive and one-time therapies

Develop non-invasive and one-time therapies

Rank 1: Develop new treatments that do not require brain surgery to manage hydrocephalus

Rank 2: Develop new one-time treatments to manage hydrocephalus (i.e. permanent treatments that do not require additional interventions)

Rank 8: Develop ways to prevent the development of hydrocephalus

Rank 12: Develop therapies (e.g. stems cells, cellular regeneration) to repair brain damage for people affected by hydrocephalus

Reduce the burden of current treatments

Reduce the burden of current treatments

Rank 4: Develop ways to monitor shunt function and detect shunt malfunction non-invasively and/or outside of the hospital

Rank 5: Improve shunt components and surgical techniques to prevent shunt blockages and mechanical failure (e.g. broken valve, disconnected tubing, broken tubing)

Rank 6: Develop methods to non-invasively or less-invasively unblock shunts

Rank 7: Improve shunt designs and surgical techniques to enable less or non-invasive shunt placement and shunt revisions

Rank 9: Develop a better understanding of the symptoms patients experience when their shunt is failing

Rank 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)

Improve the screening and diagnosiss

Improve the screening and diagnosis of hydrocephalus

Rank 3: Identifying the causes and processes that lead to hydrocephalus (e.g. genetic influences, inflammation)

Rank 10: Improve ways of diagnosing and screening for hydrocephalus to allow for earlier detection of the condition

Rank 20: Develop ways to accurately determine if a patient would benefit from hydrocephalus treatment, such as shunt, prior to surgery

Improve quality of life (QOL)

Improve quality of life

Rank 14: Improve our understanding and develop ways to reduce the emotional and psychological challenges (e.g. stress, anxiety, and depression) of living with hydrocephalus

Rank 15: Improve our understanding and develop ways to reduce headaches and migraines related to hydrocephalus and hydrocephalus treatments

Rank 16: Improve our understanding and develop ways to reduce impairments in attention, learning, memory, and problem solving related to hydrocephalus

Rank 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

Improve access to care

Improve access to care

Rank 13: Determine how to improve patient access to doctors and hospitals that have expertise in hydrocephalus

Rank 18: Determine how to improve coordinated care across medical specialties (e.g. neurosurgery, neurology, cognitive therapy, physical therapy, etc.) for people with hydrocephalus

Rank 19: Determine how to improve a patient's transition from pediatric to adult medical specialists (doctors)

Inform Scientists and Physicians about your Hydrocephalus Experience

Join HAPPIER - An online database created to bring the patient perspective to hydrocephalus research. HAPPIER will help accelerate hydrocephalus research by providing patient-generated and patient-centered data to the research community.

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