PRESS RELEASE – from the International Topical Steroid Awareness Network
ITSAN Partners with NORD® to Initiate the Topical Steroid Withdrawal Syndrome Patient Registry. A natural history study is planned for participants worldwide to advance understanding and impact of TSW Syndrome.
Dacula, GA, August 11, 2022 — The International Topical Steroid Awareness Network (ITSAN) has partnered with the National Organization for Rare Disorders (NORD) to plan and build a registry to research Topical Steroid Withdrawal (TSW) Syndrome. TSW Syndrome is a debilitating condition that can arise from the use of topical steroids to treat a skin condition such as eczema. Many sufferers are bedridden and housebound for months to years before symptoms abate.
This study, designed by researchers, medical experts and patients, will provide the opportunity for patients and caregivers around the world to share information about their experience with TSW Syndrome. The information in this registry will be used to establish prevalence, advance research and improve care. TSW Syndrome is an iatrogenic condition, which means it is a condition caused inadvertently by a medical treatment. Not everyone who uses topical steroids will develop TSW Syndrome. It is unclear why some individuals experience TSW Syndrome secondary to topical steroid therapy and why others do not.
“The TSW Syndrome Patient Registry aims to address how we can prevent Topical Steroid Withdrawal Syndrome, an often unrecognized and misdiagnosed condition,” said Kathryn Tullos, ITSAN President. “Following TSW Syndrome patients within a longitudinal patient registry will provide historical data on their exposure to topical steroids, symptoms they experienced, the treatments they are prescribed, their experience with the medical community, and their quality of life over time.”
This natural history study will be hosted on NORD’s IAMRARE® online platform, which is designed to track the course of TSW Syndrome over time in a set of electronic surveys. Patients, caregivers or guardians will enter information from anywhere in the world. The data is confidential and stored securely on the platform. One goal of ITSAN is to share the collected data with researchers or institutions conducting research on TSW Syndrome.
ITSAN is launching this study in collaboration with NORD, an independent nonprofit that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. ITSAN is a member of NORD, and these two organizations will work together to understand the challenges and identify opportunities to advance research for the TSW patient population.
About The International Topical Steroid Awareness Network (ITSAN)
ITSAN is the only 501(c)(3) non-profit charity serving the global TSW Syndrome community as a resource for the individual, the caregiver, and the healthcare provider. ITSAN has grown into a thriving worldwide online community where members comfort, share, and support one another. ITSAN supports the TSW community with resources and information provided on the website (ITSAN.org), through social media channels and newsletter updates, and through direct communication with TSW sufferers. Resources also include scientific papers, educational pamphlets for doctors, and video podcasts to advocate for the community. ITSAN has a private online support group which has grown to 14,000 members. ITSAN hosts global virtual meetups and conferences. ITSAN participates in numerous national and international coalitions and advocacy initiatives to advance the mission to raise awareness of Topical Steroid Withdrawal Syndrome and support affected individuals. For more information visit ITSAN.org
ITSAN Media Contact:
Michelle Li, mli@itsan.org, ITSAN
About National Organization for Rare Disorders, Inc. (NORD® ®)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org
NORD Media Contact:
Rohan Narayanan, rnarayanan@rarediseases.org, NORD
