SECOND & THIRD QUARTER 2024 NEWSLETTER
It’s been a busy 2024!
ITSAN was pleased to participate in the National Eczema Association’s Eczema Expo in Denver this summer. ITSAN Board Members, Kelly Barta and Janelle Harris, exhibited on behalf of the organization, talking with attendees about concerns around TSW and raising awareness of the condition. Additionally, Kelly co-presented a session with Dr. Peter Lio, “The Skinny on Steroids and TSW,” and co-led a TSW Support Group with Dr. Olivia Hsu Friedman. There were more attendees than ever this year, who identified as being touched by topical steroid withdrawal; highlighting the great importance and clear need for this condition to be recognized, acknowledged and addressed.
CALL TO ACTION: ICD-10 Code Letters are needed again!
The CDC just conducted a follow up review of ITSAN’s proposed TSW ICD-10 code. They have an open comment period to hear from the public through October 10. Let’s get this across the finish line by voicing our loud support one more time by sending in letters.
Introduction of a new ICD-10-CM code for TSW would enable healthcare providers to precisely report TSW cases, improving efforts to establish the true TSW incidence and prevalence. Having a TSW code would also enhance research endeavors and understanding of the natural history of this condition. Since there is still so much resistance to TSW in the medical community, it is up to us to flood this committee with letters of support, expressing the urgency and need for a TSW code.
You can access the template here: Updated TSW ICD-10 Code Support Letter. Send your letters to nchsicd10CM@cdc.gov.
TSW Pilot Study Overview
ITSAN News
Patient Registry
ITSAN is still working hard on the Patient Registry project! It has been a long and arduous process, and we are happy to report that the writing and programming phases are complete! This involves programming all of the consents, demographic information, and survey questions we have created into the online platform. We have been meeting weekly with the NORD (National Organization for Rare Disorders) team to carefully edit and test the surveys. This includes everything from making sure the questions make sense and flow, to ensuring the scroll bars work. This process is very detailed but with phase one of testing now complete, we are moving on to phase two!
Phase two of testing requires having a handful of testers complete the surveys and let us know if there is anything confusing or broken or needing further clarification and editing. Once phase two is complete, we will present the Registry to the IRB (Institutional Review Board) for approval. Once approved, we will be able to launch! We will be rolling out information to our community about how to enroll, participate and what to expect. Hopefully, we will have much more on this before the end of the year. Thank you for your patience and your support!
As a reminder, there are associated costs for an IRB and for keeping the Registry on the online platform. Please donate in any amount to keep this project up and running!
Media Coverage of TSW
Support ITSAN
When you support ITSAN, you help us raise TSW Syndrome awareness in the medical community. Your donation helps us develop new resources on ITSAN.org and provide information and support on social media and in our daily communication with TSW sufferers and caregivers around the world.
How can you help? You can donate to ITSAN here or start your own fundraiser for ITSAN. If you create a fundraiser for ITSAN, please tag us so we can share it with others. Thank you!
Questions? Email us at info@itsan.org
THANK YOU ITSAN SPONSORS
The generous giving of our sponsors allows us to do the important work of our mission – raising awareness of TSW and supporting all affected individuals. If you would like to become a sponsor, or know someone who would, please email or pass on our contact information – info@itsan.org
Thank you to our newest sponsors Astria and Phoilex!
✨ PLATINUM SPONSOR✨
