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.

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.)

American Association of Clinical Endocrinology (AACE). Founded in 1991, we are a global, inclusive community of more than 5,700 endocrine-focused clinical members, affiliates and partners from every walk of professional life. The AACE Journey for Patients With Thyroid Disease is your guide as you manage the complex, emotional, and often confusing experience of living with a thyroid condition.

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.

Patients Rising. Formed in 2015, Patients Rising has developed a significant following of over 110,000 patients and caregivers and has guided more than 25,000 of them on their journeys to advocate for themselves and their loved ones to get the care and treatments they need to live a fulfilling life.

Patient Helpline. Our patient education and support platform provides direct, personalized access to information and a network of public and nonprofit programs and resources. Here you’ll find reliable, expertly curated information via our learning modules which include traditional content, videos, ebooks, webinars, podcasts, and infographics.

Get the TED Health Care Team PDF.

Recent Thyroid Eye Disease (TED) Research and Clinical Trials worth noting:

RECRUITING: A Trial to Investigate Teprotumumab Subcutaneous Administration Compared With Placebo in Male and Female Adult Participants With Moderate-to-severe Active Thyroid Eye Disease.
https://clinicaltrials.gov/study/NCT06248619?term=NCT06248619&rank=1

ACELYRIN is currently recruiting for a clinical study designed to evaluate lonigutamab in subjects with TED. Use this link to learn more.

Randomized, double-masked, placebo-controlled study to investigate the efficacy and safety of TOUR006 (pacibekitug) in adults with TED

Intervention:
TOUR006 (pacibekitug), a fully human monoclonal antibody against IL-6L
Delivery – subcutaneous injection

Total Number of injections – 3
Time between injections – 8 weeks

Recruiting – 81 participants
NCT Number: NCT06088979
Study Name: spiriTED

Visit: https://clinicaltrials.gov/study/NCT06088979 for more information.

• • REVEAL-1
    • Phase 3 clinical trial to evaluate the potential benefits and safety of the subcutaneously administered investigational drug VRDN-003 for people affected by active TED
    • https://clinicaltrials.gov/study/NCT06625411
    • Recruiting participants
  • REVEAL-2
    • Phase 3 clinical trial to evaluate the potential benefits and safety of the subcutaneously administered investigational drug VRDN-003 for people affected by chronic TED
    • https://clinicaltrials.gov/study/NCT06625398
    • Recruiting participants
  • VRDN-003-303
    • Safety and tolerability study of subcutaneously administered investigational drug VRDN-003 for people with active or chronic TED
    • https://clinicaltrials.gov/study/NCT06812325  
    • Recruiting participants

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.

Clinical Trial – A Study of Efgartigimod PH20 SC Given by Prefilled Syringe in Adults With Thyroid Eye Disease

UplighTED Clinical Trial Website

Condition – Thyroid Eye Disease
Official Title – A Phase 3, Randomized, Double-Masked, Placebo-Controlled, Multicenter Study to Evaluate the Efficacy, Safety, Tolerability, Pharmacokinetics, Pharmacodynamics, and Immunogenicity of Efgartigimod PH20 SC Administered by Prefilled Syringe in Adult Participants with Thyroid Eye Disease

Intervention – Combination Product: Efgartigimod PH20SC and Placebo
Delivery – subcutaneous injection
Total Number of treatments – 24 weeks; Open-Label Extension study available
Time between treatments – 1 week
Recruiting – Now
Recruiting – 108 participants

NCT Number: NCT06307626
EU Trial (CTIS) Number: 2023-509198-22-00
Study Name: UplighTED – ARGX – 113-2301; ARGX – 113-2309

Thyroid Eye Disease / TED Studies

AMGEN TO SUBMIT TEPROTUMUMAB MARKETING AUTHORIZATION APPLICATION TO THE EUROPEAN MEDICINES AGENCY
April 26, 2024 – Amgen (NASDAQ:AMGN) today announced the imminent submission of a Marketing Authorization Application (MAA) to the European Medicines Agency (EMA) for teprotumumab, a fully human monoclonal antibody and targeted inhibitor of the insulin-like growth factor-1 receptor (IGF-1R), for the treatment of moderate to severe Thyroid Eye Disease (TED) in adults. TED is a serious, progressive, debilitating and potentially vision-threatening autoimmune disease that can cause proptosis (eye bulging), diplopia (double vision), eye pain, redness and swelling. If approved, teprotumumab would be the first and only medicine approved for TED in the European Union.

January 2024, A Prospective Study Examining Audiometry Outcomes Following Teprotumumab Treatment for Thyroid Eye Disease
Study Conclusion: Long-term hearing loss in TED patients with normal baseline hearing is rare after treatment with teprotumumab(incidence of 3%). In those who already had hearing dys-function before therapy, worsening was seen in 20% (4 of 20)patients. Patients with baseline hearing dysfunction are at significantly greater risk of hearing loss and would benefit from the institution of a screening program.

For Many Patients with Graves’ Disease, It Is a Long Battle
Study Conclusion: In this longitudinal cohort study spanning 20 years, the long-term outcome of GD is quite variable, but most patients experienced a chronic or remitting–relapsing course and required either definitive treatment or long-term ATD therapy. There is a nonnegligible accumulation of new TED cases, especially after radioactive iodine treatment. There is a significant long-term symptom burden, especially in those who develop hypothyroidism, regardless of whether the hypothyroidism is related to treatment of the hyperthyroidism or whether it develops spontaneously.

How Age Affects Teprotumumab Tx in Thyroid Eye Disease
A study reveals nearly a quarter of patients treated with teprotumumab for thyroid eye disease require re-treatment within a year, and older patients are more likely to require additional treatment.

Proptosis Regression After Teprotumumab Treatment for Thyroid Eye Disease
The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc.

Management of Thyroid Eye Disease: A Consensus Statement by the American Thyroid Association and the European Thyroid Association

Evaluation of Depression and Anxiety in a Diverse Population With Thyroid Eye Disease Using the Nationwide NIH All of Us Database

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.

April 2023. The Most Urgent Voice in Eye Research – The Patient’s
by Jeff Todd, JD, MS, & Kira N. Baldonado, MPH @ Prevent Blindness.

Click this poster to open print / PDF version.

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.

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.

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.

Read the full article here.

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.

Amgen August TED Connects Newsletter
The Patient Advocacy Team says, “We’re excited to share the second issue of the TED Connects newsletter, a collaborative effort by the Amgen Patient Advocacy team and other organizations we proudly support to keep us connected and informed on the latest in the Thyroid Eye Disease (TED) community.”

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

A survey of current practices by the British Oculoplastic Surgery Society (BOPSS) and recommendations for delivering a sustainable multidisciplinary approach to thyroid eye disease in the United Kingdom

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

A novel method for quantifying the biomechanical parameters of orbital soft tissue using a corneal dynamic scheimpflug analyser: a retrospective study

Ho Sik Hwang, Eun Chul Kim, Man Soo Kim, Suk-Woo Yang

Comparative assessment of Graves’ disease and main extrathyroidal manifestation, Graves’ ophthalmopathy, by non-targeted metabolite profiling of blood and orbital tissue

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

Debate: Will biological agents supplant systemic glucocorticoids as the first-line treatment for thyroid-associated ophthalmopathy?

Terry J. Smith, Luigi Bartalena

Updates on the understanding and management of thyroid eye disease

Clara J. Men, Andrea L. Kossler, Sara T. Wester

Investigation of Meibomian Gland Function and Dry Eye Disease in Patients with Graves’ Ophthalmopathy

Sachiko Inoue, Motoko Kawashima, Reiko Arita, Ai Kozaki, Kazuo Tsubota

Evidence That Baseline Levels of Low-Density Lipoproteins Cholesterol Affect the Clinical Response of Graves’ Ophthalmopathy to Parenteral Corticosteroids

Adriano Naselli, Diletta Moretti, Concetto Regalbuto, Maria Luisa Arpi, Fabrizio Lo Giudice, Francesco Frasca, Antonino Belfiore, Rosario Le Moli

Low- vs. high-dose radiotherapy in Graves’ ophthalmopathy: a retrospective comparison of long-term results

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

Emerging Insights Into the Role of Epigenetics and Gut Microbiome in the Pathogenesis of Graves’ Ophthalmopathy

Yan Wang, Xiao-Min Ma, Xin Wang, Xin Sun, Ling-Jun Wang, Xin-Qi Li, Xiao-Yan Liu, Hong-Song Yu

This page is made possible by the extensive research done by TED patients: Wendy & Vicki.