{"id":31931,"date":"2024-07-30T12:35:37","date_gmt":"2024-07-30T16:35:37","guid":{"rendered":"https:\/\/www.hydroassoc.org\/?page_id=31931"},"modified":"2025-03-24T12:05:49","modified_gmt":"2025-03-24T16:05:49","slug":"community-research-priorities","status":"publish","type":"page","link":"https:\/\/www.hydroassoc.org\/community-research-priorities\/","title":{"rendered":"Community Research Priorities"},"content":{"rendered":"\n\n\t\t\t\t\n\t\t\t\t\"Screen\n\t\t\t\t<\/a>\n\t\t\t\n\t\t\t\t\t\t\tRead Study Here\n\t\t\t\t\t<\/a>\n

\n\t\tCommunity Research Priorities\n\t<\/h1>\n\t

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

With input from almost 1,500 people over the course of two surveys and a workshop we have developed our\u00a0Top 20 Community Research Priorities.\u00a0<\/strong><\/p>\n

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.<\/p>\n\t\t\t\t\tOur Process<\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t

1. First Survey<\/strong><\/p>\n

Following the JLA methodology, we first sent out a survey with an open-ended question asking people living with hydrocephalus, caregivers, research scientists, and medical professionals what they would like to see improved our changed. With 890 respondents<\/strong> and 2,442 responses<\/strong>, the answers were condensed into 146 priority statements<\/strong>. <\/p>\n

2. Second Survey<\/strong><\/p>\n

We then sent out a second survey with the top 49 of those statements<\/strong>, asking the same groups to choose their top 10<\/strong> from the list. Based on the overall rankings, as well as rankings looking at particular age groups and type of respondent (patient\/caregiver vs. researchers and medical professionals), we determined 21 statements<\/strong> which were representative of the group as a whole as well as the subgroups.<\/p>\n

3. Workshop<\/strong><\/p>\n

We hosted a 2-day virtual workshop<\/strong>, where 34 attendees<\/strong> were invited to discuss and prioritize the 21 statements<\/strong>. With trained facilitators, the group were guided through multiple breakout sessions and consensus building exercises. The group decided that two of the statements should be combined, leading us to the Top 20 Community Research Priorities.\u00a0<\/strong><\/p>\n

We recruited participants for each stage through social media and email. We strived for a diversity in gender, ethnicity, race, socioeconomic status, hydrocephalus etiology, and connection to hydrocephalus. <\/p>\n\n

\n\t\tFive Areas of Focus\n\t<\/h2>\n\t\t\t\t\"Develop\n\t\t

Develop non-invasive and one-time therapies<\/h3>\n\t\t\t\t

Rank 1: <\/strong>Develop new treatments that do not require brain surgery to manage hydrocephalus<\/p>\n

Rank 2:<\/strong> Develop new one-time treatments to manage hydrocephalus (i.e. permanent treatments that do not require additional interventions)<\/p>\n

Rank 8:<\/strong> Develop ways to prevent the development of hydrocephalus<\/p>\n

Rank 12: <\/strong>Develop therapies (e.g. stems cells, cellular regeneration) to repair brain damage for people affected by hydrocephalus<\/p>\n\t\t\t\t\"Reduce\n\t\t

Reduce the burden of current treatments<\/h3>\n\t\t\t\t

Rank 4:<\/strong> Develop ways to monitor shunt function and detect shunt malfunction non-invasively and\/or outside of the hospital<\/p>\n

Rank 5:<\/strong> Improve shunt components and surgical techniques to prevent shunt blockages and mechanical failure (e.g. broken valve, disconnected tubing, broken tubing)<\/p>\n

Rank 6:<\/strong> Develop methods to non-invasively or less-invasively unblock shunts<\/p>\n

Rank 7: <\/strong>Improve shunt designs and surgical techniques to enable less or non-invasive shunt placement and shunt revisions<\/p>\n

Rank 9:<\/strong> Develop a better understanding of the symptoms patients experience when their shunt is failing<\/p>\n

Rank 11:<\/strong> 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)<\/p>\n\t\t\t\t\"Improve\n\t\t\t

Improve the screening and diagnosis of hydrocephalus<\/h3>\n\t\t\t\t

Rank 3:<\/strong> Identifying the causes and processes that lead to hydrocephalus (e.g. genetic influences, inflammation)<\/p>\n

Rank 10:<\/strong> Improve ways of diagnosing and screening for hydrocephalus to allow for earlier detection of the condition<\/p>\n

Rank 20:<\/strong> Develop ways to accurately determine if a patient would benefit from hydrocephalus treatment, such as shunt, prior to surgery<\/p>\n\t\t\t\t\"Improve\n\t\t

Improve quality of life<\/h3>\n\t\t\t\t

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

Rank 15:<\/strong> Improve our understanding and develop ways to reduce headaches and migraines related to hydrocephalus and hydrocephalus treatments<\/p>\n

Rank 16:<\/strong> Improve our understanding and develop ways to reduce impairments in attention, learning, memory, and problem solving related to hydrocephalus<\/p>\n

Rank 17:<\/strong> Improve our understanding and develop ways to restore physical function and motor control (e.g. walking, balance, and urinary continence) in people with hydrocephalus<\/p>\n\t\t\t\t\"Improve\n\t\t

Improve access to care<\/h3>\n\t\t\t\t

Rank 13:<\/strong> Determine how to improve patient access to doctors and hospitals that have expertise in hydrocephalus<\/p>\n

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

Rank 19:<\/strong> Determine how to improve a patient’s transition from pediatric to adult medical specialists (doctors)<\/p>\n\t\t\t\t\tWhat Do These Rankings Mean?<\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t

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<\/a> which set out to reinvigorate the conversation of quality of life in our research community.\u00a0<\/p>\n

Furthermore, having these priorities back by a validated methodology will be useful in HA’s advocacy, awareness, education, and fundraising efforts.<\/p>\nWhat does this mean for those living with hydrocephalus?<\/b>
\nAdvocacy, awareness, education, fundraising. Research will inform treatment and guidance for quality of life.\nWhat does this mean for scientists? <\/b>
\nWe will prioritize funding research in these areas, fundraising focus.\nWhat does this mean for physicians?
\n<\/b>Once research is complete-this will lead to more understanding of treatment and quality of life, more physician awareness of hydrocephalus signs in adults.\n\t\t\t\t\tFrom Rank 1 to Rank 20 – These are ALL important:<\/a>\n\t\t\t\t\t\t\t\t\t\t\tExpand<\/i><\/a>\n\t\t\t\t\t

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<\/strong>, 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.<\/p>\n

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

    \n\t\tInform Scientists and Physicians about your Hydrocephalus Experience\n\t<\/h2>\n\t

    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.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tJoin Now\n\t\t\t\t\t<\/a>\n\n\r\n

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