Ichthyosis Registry Needs You!!
(January 22, 2002) - The National Registry for Ichthyosis and Related Disorders needs you to reach their goal of enrolling every person in the U.S. with ichthyosis (with the exception of ichthyosis vulgaris). The registry is funded by the National Institutes of Health to promote research into the diagnosis and treatment of the ichthyosis. The bigger the registry is, the more they can do to promote understanding about the ichthyosis, and that leads to better treatment.
What can enrolling in the registry do for you? - The registry can confirm or clarify your diagnosis. You can share that information with your doctor.
- Depending on the form of ichthyosis you have, you may be eligible to be tested for a genetic diagnosis, and genetic counseling regarding that diagnosis. The specific genetic mutations for several forms of ichthyosis have been identified.
- As a Registry enrollee, you can choose to be notified about research studies related to your particular form of ichthyosis. You can then choose to contact the investigator or not.
- There is no obligation to participate. Your information will be kept completely confidential.
Even if you are not interested in participating in research projects, sharing your diagnosis and how it affects you with the Registry helps create a valuable resource for those researchers who are interested in studying and treating people with ichthyosis and related disorders. The Registry uses the information that you share with them to educate dermatologists and researchers about the Registry and its resources by: presenting information at scientific meetings; publishing notices in medical journals; and providing a doctor’s forum on the Registry website for doctors to ask questions about ichthyosis.
Enrolling is quick, easy and private; your name and personal information are never shared. To enroll now, contact Geoff Hamill, Registry Coordinator, at 1-800-595- 1265, or email him by clicking here, or visit their website at www.skinregistry.org.
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