Date: 04/07/2022

How To Contribute To Ichthyosis Research

When a particular faulty gene from a parent is inherited, ichthyosis can occur. This particular gene affects skin regeneration and causes thick, scaly, and dry skin. There are at least 20 types of ichthyosis that affects 1 in 250. As a rare condition, there is still much to be learned from why it occurs and what treatment options would help the people who have it.

Continuous research is important to find more treatment options and to answer all the questions surrounding ichthyosis. For this, every person with an invested interest has a role they can undertake to contribute to the research surrounding ichthyosis. From students to healthcare providers, everyone is an essential part of the future of ichthyosis research.

For students

Students gain a lot by doing research, as conducting research enhances their investigating skills that are helpful in a classroom setting. For this, The Yale School of Medicine is a great place to start for students who want to join the research for ichthyosis. Currently, there is an active and ongoing study about ichthyosis and how it can affect children's growth that has been running since 2008 and will end in 2028. Together with other industry experts, they can help widen the research about the potential cures and find new information about the condition.

Ichthyosis is a condition that has been vastly researched, but having students contribute might give new perspectives on the skin condition. Often, there are things students are more curious about than practitioners who have gotten used to the traditional way of thinking and doing things. They can also offer new perspectives and new ways of approaching specific health issues like ichthyosis.

For healthcare providers

Who better to contribute to the research of a rare condition than healthcare providers? Medical practitioners already have the basic knowledge that will help them analyze and research ichthyosis. This will also widen their scope and knowledge, pushing them even outside of their specializations. Medical practitioners might be familiar with the American Skin  , a volunteer-led organization that dedicates its resources to the research and education of skin diseases. One of their many focuses is ichthyosis research and how to further enhance the research for it. With the recent pandemic, clinical trials and research have begun to be decentralized. With the expansion of research on behavior, quality of life, screening, and diagnostics, doctors and nurses across different places now have equal opportunities to contribute to ichthyosis research.

They do not even have to travel to do this. Clinical research and creating reports, on specialist fields like ichthyosis, are now tasks that doctors and nurses can do remotely. On top of helping provide better working situations for practitioners, remote arrangements are also improving the healthcare system. More ichthyosis patients can now be included in studies, even if they live far away since they have access to specialists and health researchers.

For the everyday person

The everyday person can do a lot to help the research of ichthyosis. Aside from having discourses around the topic, they are also able to direct resources that can aid those who have the condition and the researchers who are tirelessly working to know more about the conditions. Similarly, The Foundation for ichthyosis & Related Skin Types (FIRST) is an organization that contributes to the primary discourse and awareness of ichthyosis. The public can get involved and participate in conferences and forums to collect more data on ichthyosis. They can also contribute to the overall research with their experiential knowledge which provides them a unique perspective on various subjects.

The public could also help by reading and learning more about the topic. With their knowledge, they can talk to family members and raise awareness of the condition. They can also help patients find expert physicians through telemedicine. By pointing the patients in the right direction, they can receive the care they need.

Written by  Rae Johns

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