Thyroid Eye Disease (TED) Research & Resources Library
Thyroid eye disease (TED) is an autoimmune disorder that affects the eyes and the surrounding tissues. It is commonly associated with Graves’ disease, but can occur in individuals with other thyroid disorders as well. TED can cause eye bulging, double vision, and eye pain, among other symptoms.
The research and resources below can provide valuable information and support for individuals with TED and their loved ones. It is important to work closely with a healthcare provider to manage and treat TED. Please review our TED Community disclaimer.
Opportunities
Thyroid Eye Disease Patient & Caregiver Event will be held on September 28, 2023 in New York, NY featuring board-certified ophthalmologist and oculoplastic surgeon, Dr. Lelli. This is an in person event as well as virtual, free tickets here. Event hosted by Alliance for Patient Access. Learn more by visiting . (Get the poster here!)
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The Infusion Access Foundation is hosting its second Champions Weekend. The event is a patient advocate retreat that allows patients to learn about various advocacy skills in a supportive and collaborative environment. Champions Weekend is intended to be a “train the trainer” style program that will provide our Champions with the tools they need to become fierce and savvy advocates and assist their respective communities to better understand their disease, treatment options, and healthcare rights.
The Infusion Access Foundation team curates professional videos of each participant allowing Champions to share their story and adding a face to the advocacy issues we stand for. This empowering weekend fosters a cohort of Infusion Access Foundation leaders that stand together for treatment.
This event will be held in Austin, TX from Friday, Dec 1 to Sunday, Dec 3, 2023. Transportation and housing assistance will be provided. If you’re interested in attending this event, please complete the application linked here. Space is limited.
TED Awareness Week begins November 13th.
Opportunities to get involved will be coming!
Featured Article
MEDICAL NEWS TODAY: Everything you need to know about exophthalmos.
Exophthalmos describes a condition where the eyeball protrudes from the eye socket, making it appear to bulge. It can affect one or both eyes and may occur due to problems with the thyroid gland.
Depending on how severe it is, exophthalmos can cause eye problems such as corneal dryness and conjunctivitis, which is an inflammation of the membrane lining the eye. In the long-term, symptoms tend to improve, but this can take years. There is a possibility that the eyes may continue to bulge if treatment is not received.
Featured Article
OPHTHALMOLOGY TIMES: How our Understanding of Thyroid Eye Disease (TED) Has Evolved
Our understanding of Thyroid Eye Disease (TED) has changed considerably over the last few years, driven primarily by new treatment options and research. This evolved understanding has prompted specialists in the field to reconsider the course of the disease and how to approach treatment.
Here are a short list of resources related to thyroid eye disease (TED):
Find a TED Specialist Thyroid Eye Disease (TED) is a rare eye condition. And not all eye doctors (also known as ophthalmologists) have experience treating it. Make sure you’re seeing one that does. This TED Specialist page is maintained by Horizon Therapeutics.
The American Thyroid Association (ATA) is a professional association dedicated to promoting thyroid health and research. They have a section on their website dedicated to TED that includes information on diagnosis, treatment, and management of the disease.
Prevent Blindness offers well-rounded information about Thyroid Eye Disease (TED) as well as a TED Art Therapy program.
The Assistance Fund is an independent charitable patient assistance organization that provides support for adults and children with rare and chronic diseases. The organization may help provide families with financial and travel assistance. (Visit the TED page.)
Kellogg Eye Center provides a comprehensive overview of thyroid eye disease (TED) and, in a second article, discusses what to expect after you have received a diagnosis.
The National Library of Medicine offers articles and research about Thyroid Eye Disease (TED). This U.S. government website, noted as The National Center for Biotechnology Information, advances science and health by providing access to biomedical and genomic information.
PubMed is a database of medical research articles maintained by the National Library of Medicine. A search for “thyroid eye disease” will yield a wealth of research articles on the topic.
ClinicalTrials.gov is a database of clinical trials maintained by the National Institutes of Health. A search for “thyroid eye disease” will yield a list of ongoing and completed clinical trials related to the disease.
The Thyroid Eye Disease Charitable Trust is a UK-based organization that provides support and resources for individuals with TED. They offer information on the disease, treatment options, and patient stories.
Let’s Face It Together, is a nonprofit that provides renewed hope to those dealing with the physical and emotional challenges caused by facial alterations resulting from cancer, autoimmune disease, spousal abuse, accidents and other tragedies. LFIT fills the void between health insurance coverage and patient care.
THE EYES OF MY MARCH
“One eye shows what TED was like for me.
The eye with the butterfly wing is my experience after treatment.”
~ a TED ART project
Recent Thyroid Eye Disease (TED) Research and Clinical Trials worth noting:
April 2023. The Most Urgent Voice in Eye Research – The Patient’s
by Jeff Todd, JD, MS, & Kira N. Baldonado, MPH @ Prevent Blindness.
TEPEZZA® (teprotumumab) Approved in Brazil for the Treatment of Active Thyroid Eye Disease (TED). The first international approval outside of the U.S.
FDA expands teprotumumab indication to include any thyroid eye disease duration, activity.
Viridian Therapeutics is recruiting participants for their THRIVE – TED phase 3 study. Use this link to read the science and results of Viridian studies.
Viridian Therapeutics is requesting your help to develop new therapies for Thyroid Eye Disease (TED). Please see their THRIVE clinical study (PDF).
Viridian announced positive top line results from its ongoing Phase 1/2 Trial evaluating VRDN-001 in patients with TED.
Immunovant is presently recruiting for a TED clinical research study. Please use this link to learn more.
See “Understanding Thyroid Eye Disease” contributed by Immunovant.
Immunovant announced two new development programs for the drug batoclimab, including one for Graves’ disease.
Research presented at the American Society of Ophthalmic, Plastic, and Reconstructive Surgery annual meeting noted a decrease in eye muscle size for patients with TED who underwent treatment with TEPEZZA (TM), resulting in better eye movement and less double vision.
Sling Therapeutics is now recruiting participants for a Phase 2b study to evaluate a new oral treatment for TED.
Check out the library of TED articles and videos published by Healthy Women
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Thyroid Eye Disease (TED) articles published by Everyday Health
7 Signs and Symptoms of Thyroid Eye Disease (Graves’ Ophthalmopathy)
The symptoms of thyroid eye disease can be similar to those of other eye conditions.
The Healthcare Professionals That Should Be on Your Thyroid Eye Disease Care Team
These doctors and experts can help treat the symptoms of thyroid eye disease (Graves’ ophthalmopathy).
What to Know About Thyroid Eye Disease (Graves’ Ophthalmopathy)
Inflammation in the eye tissues can trigger problems such as vision loss and proptosis (eye bulging).
7 Ways to Ease the Symptoms of Thyroid Eye Disease
Use these tips to help alleviate the symptoms of thyroid eye disease naturally.
4 Treatments for Thyroid Eye Disease
Thyroid eye disease can be a debilitating condition. Here are four ways to help alleviate the symptoms.
Why Gail Devers Is on a Mission to Educate About Graves’ Disease and Thyroid Eye Disease
This former Olympic athlete doesn’t want anyone to go undiagnosed for as long as she did.
TED! A long journey through the woods.
Picture generously contributed by Gaye Gardner Scales,
in honor of the artist, her sister Judy Gardner Hoffman.
Thyroid Eye Disease can cause double vision as seen in this TED ART project.
TED Support & Services
Bromberg Translation and Telephonic Interpreting Services
No-cost program offering translation and telephonic interpretation services for Spanish-speaking individuals and families impacted by specific health conditions
Center for Chronic Illness
Monthly web-based peer support group for those living with Thyroid Eye Disease, professionally facilitated by a licensed social worker
Patient Advocate Foundation’s Rare Disease CareLine
Provides support and assistance to patients with chronic, debilitating diseases to help access care and treatment recommended by their doctor. Case managers will help navigate roadblocks to access to care and affordability to Americans with chronic, rare and ultra-rare illnesses.
National Organization for Rare Disorders (NORD)
Emergency Relief Program provides financial assistance that can be used to pay for unexpected or emergency non-medical expenses such as utility expenses, cellular or internet service, emergency repairs to car, home or major appliance, and rent or mortgage payment assistance. For information about the emergency relief program, send an email to NORD at ThyroidEyeDisease@RareDiseases.org. *costs for medications are not eligible for NORD program
Patient Advocate Foundation
Provides support and assistance to patients with chronic, debilitating diseases to help access care and treatment recommended by their doctor. Case managers will help navigate roadblocks to access to care and affordability to Americans with chronic, life-threatening and debilitating illnesses.
The Graves’ Disease and Thyroid Foundation is a non-profit organization that provides support and resources for individuals with Graves’ disease and other thyroid disorders, including TED. They offer a variety of resources, including educational materials and a patient forum.
oneGRAVESvoice
A resource made possible through an unrestricted grant to the Graves’ Disease and Thyroid Foundation to connect, educate and empower the Graves’ disease and TED communities.
Find an ASOPRS surgeon
The American Society of Ophthalmic Plastic and Reconstructive Surgery, established in 1969, is the world’s largest organization of surgeons dedicated exclusively to the health and beauty of the eyes and face. All members are board-certified medical doctors who have trained 4 years as interns and residents in ophthalmology followed by fellowship training in aesthetic and reconstructive procedures of the eyelids, eye sockets, tear ducts and face. Most ASOPRS surgeons have trained 6 years or more and before becoming members, all candidates must submit scientific research and pass rigorous oral and written examinations.
Helpful Information Specific to TED
National Eye Institute
https://www.nei.nih.gov/
For more than 50 years, the National Eye Institute (NEI) has been on the front lines of vision research — and we continue to support cutting-edge research projects that investigate new ways to prevent, treat, or even reverse vision loss. We also work hard to help the public learn about vision problems and how to keep their eyes healthy.
Frontiers in Endocrinology
https://www.frontiersin.org/
Frontiers in Endocrinology publishes rigorously peer-reviewed research from basic molecular and cellular communication to clinical care, advancing our understanding of the endocrine system, and leading to novel therapies for some of the most prevalent health issue.
Ophthalmology 360®
https://ophthalmology360.com/
Ophthalmology360 is an informative, educational, dynamic online community space for ophthalmologists, optometrists, healthcare providers, patients, and patient advocates with an interest in eyecare. Our mission is to help improve patient outcomes, patient satisfaction, and patient quality of care for medically necessary and elective eyecare.
Links to Explore
In the section below, you can view a wealth of research papers and articles related to TED. While we do not endorse or recommend any particular study or article, we have found this information useful in our quest to better understand TED and its possible solutions. The date range for these research papers and articles is 2019 – 2023.
Insulin-like Growth Factor-I Receptor and Thyroid-Associated Ophthalmopathy
Terry J Smith, Joseph A M J L Janssen
Future Projections in Thyroid Eye Disease
Giuseppe Barbesino, Mario Salvi, Suzanne K Freitag
Cytokines as Targets of Novel Therapies for Graves’ Ophthalmopathy
Poupak Fallahi, Silvia Martina Ferrari, Giusy Elia, Francesca Ragusa, Sabrina Rosaria Paparo, Armando Patrizio, Stefania Camastra, Mario Miccoli, Gabriella Cavallini, Salvatore Benvenga, Alessandro Antonelli
Overview of Graves Ophthalmopathy Literature From 1999 to 2019: Bibliometric Analysis
Jiamin Cao, Nuo Wang, Shiying Hou, Xin Qi, Yu Chen, Wei Xiong
Thyroid Eye Disease: How A Novel Therapy May Change The Treatment Paradigm
Yao Wang, Amy Patel, Raymond S Douglas
Vickie Lee, Parizad Avari, Ben Williams, Petros Perros, Colin Dayan, on behalf of the British Oculoplastic Surgery Society (BOPSS) and TEAMeD
Optic Neuropathy and Diplopia from Thyroid Eye Disease: Update on Pathophysiology and Treatment
Brooke T. Johnson, Evan Jameyfield, Vinay K. Aakalu
Quality of Life in Patients with Chronic Thyroid Eye Disease in the United States
Kimberly P. Cockerham, Lissa Padnick-Silver, Noel Stuertz, Megan Francis-Sedlak, Robert J. Holt
The Role of Oxidative Stress and Therapeutic Potential of Antioxidants in Graves’ Ophthalmopathy
Tzu-Yu Hou, Shi-Bei Wu, Hui-Chuan Kau, Chieh-Chih Tsai
Teprotumumab and the Evolving Therapeutic Landscape in Thyroid Eye Disease
Andrea Lora Kossler, Raymond Douglas, Chrysoula Dosiou
Immunological Aspects of Graves’ Ophthalmopathy
Dominika Łacheta, Piotr Miśkiewicz, Alicja Głuszko, Grażyna Nowicka, Maria Struga, Ireneusz Kantor, Krzysztof B. Poślednik, Shafaq Mirza, Mirosław J. Szczepański
Mayo Clinic – Thyroid Eye Disease Research Clinic
Ongoing studies and projects in the Thyroid Eye Research Program at Mayo Clinic are aimed at better understanding the prevalence and mechanisms of thyroid eye disease (Graves’ disease), assessing patients’ treatment needs, and testing new treatments in clinical trials.
Update on thyroid eye disease: Regional variations in prevalence, diagnosis, and management
Caroline Y Yu, Rebecca L Ford, Sara T Wester, Erin M Shriver
Ho Sik Hwang, Eun Chul Kim, Man Soo Kim, Suk-Woo Yang
Dong Yoon Ji, Se Hee Park, Soo Jin Park, Kyoung Heon Kim, Cheol Ryong Ku, Dong Yeob Shin, Jin Sook Yoon, Do Yup Lee, Eun Jig Lee
Measuring Health-Related Quality of Life in Thyroid Eye Disease
Anu Sharma, Marius N Stan, Dan B Rootman
Terry J. Smith, Luigi Bartalena
Updates on the understanding and management of thyroid eye disease
Clara J. Men, Andrea L. Kossler, Sara T. Wester
Sachiko Inoue, Motoko Kawashima, Reiko Arita, Ai Kozaki, Kazuo Tsubota
Adriano Naselli, Diletta Moretti, Concetto Regalbuto, Maria Luisa Arpi, Fabrizio Lo Giudice, Francesco Frasca, Antonino Belfiore, Rosario Le Moli
Thomas Weissmann, Sebastian Lettmaier, Anna-Jasmina Donaubauer, Christoph Bert, Manfred Schmidt, Friedrich Kruse, Oliver Ott, Markus Hecht, Rainer Fietkau, Benjamin Frey, Florian Putz
Management of Thyroid Eye Disease-Related Strabismus
Mohammad Reza Akbari, Arash Mirmohammadsadeghi, Raziyeh Mahmoudzadeh, Amirreza Veisi
Understanding Pathogenesis Intersects With Effective Treatment for Thyroid Eye Disease
Terry J Smith
Yan Wang, Xiao-Min Ma, Xin Wang, Xin Sun, Ling-Jun Wang, Xin-Qi Li, Xiao-Yan Liu, Hong-Song Yu