TD News
The Clinician’s Tardive Inventory (CTI): Testing a New Way to Measure TD
The burden tardive dyskinesia (TD) places on the lives of patients, families, and to a certain extent, caregivers, cannot be overstated. The challenge for healthcare providers has been the limitations of currently utilized clinician-rated TD measurement scales such as the well-established AIMS examination.
To address these limitations, a group of researchers developed and tested the Clinician’s Tardive Inventory (CTI), a more comprehensive instrument that measures clinical signs alongside their functional impact on patients’ quality of life. The results were published in the Jan. 2024 issue of Journal of Clinical Psychiatry.[i]
A movement disorder neurologist developed an outline for the new method of measurement. This was followed by a steering committee of five neurologists and two psychiatrists who made multiple revisions with the goal of making the CTI user-friendly for clinicians of various expertise levels and to facilitate documentation of TD exams.
The CTI assesses and rates abnormal movements in various body parts such as the eye, eyelid, face, tongue, mouth, jaw, limbs and trunk as well as more complex movements, and abnormal vocalizations. The CTI also rates frequency of symptoms from 0 to 3 ranging from absent to constant. Functional impact in areas like activities of daily living (ADL), social impairment, symptom distress, and physical harm a re-rated 0 to 3 (ranging from unawareness to severe impact).
Using video recordings of TD examinations, the researchers studied the CTI for reliability and consistency. The new tool showed “fair to excellent” reliability in the rating of both TD symptoms and functional impairment. Test-retest reliability ratings were “fair to very good.”
The study’s conclusion is that the CTI is a promising new tool with proven reliability in assessing clinical signs and functional impact, but challenges remain in the domain of “symptom bother.” Therefore, a further validation study is warranted.
The abstract of the January 2024 Journal of Clinical Psychiatry article is available here: https://pubmed.ncbi.nlm.nih.gov/38270545/
[i] Trosch RM, Comella CL, Caroff SN, Ondo WG, Shillington AC, LaChappelle BJ, Hauser RA, Correll CU, Friedman JH. The Clinician’s Tardive Inventory (CTI): A New Clinical Tool for Documenting and Rating Tardive Dyskinesia. J Clin Psychiatry.2024 Jan 24;85(1):23m14886. doi: 10.4088/JCP.23m14886. PMID: 38270545.
New Coating Added to Antipsychotic Mitigates Weight Gain in Study
5/28/2024—New research from the University of South Australia shows that antipsychotics reformulated with a strategically engineered coating mitigate the unwanted side effect of weight gain. Researchers tested lurasidone (Latuda®), a second-generation antipsychotic, in rodent studies. Using a coating of tiny shell particles made from the dietary fiber inulin, and bioactive medium-chain triglycerides, researchers found the triglycerides to increase drug absorption, while the inulin boosts the diversity, abundance and activity of the gut microbiome to reduce unwanted weight gain.
Although human studies are still needed, researcher Dr. Paul Joyce is optimistic. “Because we are not developing new drugs, rather, reformulating them, the new therapies can be fast-tracked for clinical use, so we could expect them within the next few years rather than the 10-15 years needed for new drug molecules to be approved by regulatory bodies.”
View the Science Daily article.
This is the second installment of NOTD’s coverage of the latest research into antipsychotic-associated high blood sugar, weight gain, and diabetes.
New Ingrezza® Sprinkle granules provide TD treatment for those with difficulty swallowing
On April 30, 2024, Neurocrine Biosciences announced that the Food and Drug Administration (FDA) approved INGREZZA® SPRINKLE (valbenazine) capsules, a new oral granules formulation of INGREZZA for the treatment of adults with Tardive Dyskinesia (TD) and chorea associated with Huntington’s Disease (HD). Ingrezza Sprinkle provides an alternative administration option for those who experience dysphagia (difficulty swallowing) or would prefer not to take a pill.
This is great news for those with TD as TD often causes difficulty swallowing. Like the original formulation of Ingrezza, Ingrezza Sprinkle offers simple once-daily dosing in three effective dosage strengths (40 mg, 60 mg and 80 mg). The contents of the capsules can be easily sprinkled over soft food for oral administration. For more information on the side effects and safety of Ingrezza and Ingrezza Sprinkle, visit: the online Medication Guide.
Antipsychotic-associated weight gain and diabetes: New research offers hope for prevention and treatment
Individuals who take antipsychotics have higher rates of obesity and 2-3 times the risk for diabetes (Holt, 2019). A University of Toronto study has discovered that the root of the problem may lie with how antipsychotics affect the part of the brain that manages glucose metabolism.
Historically, it has been thought that blood sugar from ingestion of foods such as refined carbohydrates were solely controlled by release of the hormone insulin by the pancreas. However, this new research demonstrates that the hypothalamus in the brain is responsible for more than half the regulation of glucose metabolism in the body.
Interviewed in a University of Toronto department of psychiatry newsletter, here’s how Drs. Pereira and Hahn, who led the research team, summed up the results of their study: “Our most important finding is that antipsychotics block the ability of the brain to sense sugar and adjust glucose metabolism in the rest of the body. This may be one mechanism through which antipsychotics cause high blood sugar and diabetes.”
Researchers used a new technology combining biology and tissue analyses with computer science called “bioinformatics” that identified pathways through which antipsychotics interfere with the brain’s ability to detect and regulate glucose.
“We will soon be starting new studies to look at various interventions to prevent the negative effects of antipsychotics on glucose sensing by the brain. We hope that the new interventions we research can be brought to use quickly so that the quality of life and life expectancy of patients taking antipsychotics can improve.”
View the research abstract and full interview online.
This is the first installment of NOTD’s coverage of the latest research into antipsychotic-associated high blood sugar, weight gain and diabetes.
Holt, R. I. G. (2019). Association between antipsychotic medication use and diabetes. Current Diabetes Reports, 19(10), 96. https://doi.org/10.1007/s11892-019-1220-8
TD Advocacy Update: Federal telehealth bill to include guidance on TD screening
We are anticipating that Congress will pass legislation at the end of 2024 to extend COVID-era telehealth benefits for those on Medicare for two more years. While COVID helped revolutionize healthcare by bringing it into most people’s homes, telehealth can make it difficult for practitioners to properly screen for drug-induced movement disorders like TD.
That’s why NOTD has been advocating to Federal law makers that practitioners who care for those taking antipsychotics should receive guidance regarding screening for movement disorders in a telehealth environment. The current bill making its way through Congress includes language explaining the importance of periodic screening for medication-induced movement disorders, best practices for screening for these disorders via telehealth, and clarification regarding how to account for screening in evaluation and management code selection. (Thanks to Neurocrine Biosciences’ Government Affairs Division for their efforts in this regard.)
By including this TD-related education/guidance with the telehealth bill, we will hopefully mitigate the impact that telehealth can have on thorough TD screening and diagnosis.
Integrated AIMS reminders to assist in early detection and treatment of TD
Amalgam Rx, a healthcare tech company, has developed software that embeds AIMS assessment reminders in the electronic health records of patients at risk of developing Tardive Dyskinesia. TD experts generally advise that the Abnormal Involuntary Movement Scale, or AIMS, be given to patients taking antipsychotics and other dopamine-blocking medications every six months and more frequently if at a high risk for TD. Amalgam Rx’s reminder prompt is triggered when patients are seen who need regular AIMS screenings. At present, it is thought the AIMS test is underutilized, and that TD often goes undiagnosed, with approximately 60% of sufferers unaware they have the condition. The Amalgam Rx AIMS reminder tool will aid in early detection and diagnosis for patients. More information is available at: https://amalgamrx.com/aims/ and on-demand webinar
FDA approves new single-tablet strengths of once-daily AUSTEDO® XR
5/30/24 – Following the U.S. Food and Drug Administration’s (FDA) approval of once-daily AUSTEDO XR (deutetrabenazine) extended-release tablets in February 2023, the FDA has approved new single-tablet strengths of AUSTEDO XR. AUSTEDO XR is now available as one pill, once-daily across a range of effective doses: 24, 30, 36, 42, 48 mg/day tablet strengths offering flexibility to tailor individual treatment regimens for effective and tolerable TD and HD chorea symptom control. In addition, AUSTEDO XR can be taken with or without food. For more information on side effects and safety of the XR and standard AUSTEDO drugs, visit: Medication Guide.
New antipsychotic that doesn’t block dopamine receptors could be approved this September
KarXT (xanomeline-trospium) is a new antipsychotic drug in Phase 3 testing that acts on the muscarinic receptors instead of directly blocking dopamine receptors. For those concerned with developing TD, this is good news because the central theory of TD development entails blocking of the D2 dopamine receptors. KarXT still decreases dopamine availability in the brain by activating muscarinic receptors instead. If KarXT is approved by the FDA it would be the first antipsychotic since their first use in the 1950s (in the U.S.) that wouldn’t act by blocking dopamine receptors which can cause involuntary movements. KarXT is being developed by Karuna Therapeutics and is scheduled for an FDA decision on September 26, 2024.
Teva Pharmaceuticals presents first real-world data from IMPACT-TD Study at Psych Congress Elevate 2024
An interim analysis of 286 patients with varying levels of TD severity reported that TD has a multidimensional impact, even on patients with mild TD. Clinician-reported IMPACT-TD findings show: “98% of patients experience the impact of TD in some aspect of their quality of life; 83% of patients experience moderate to severe impact across various quality of life domains, including social (59%), psychological/psychiatric (70%), physical (53%) and vocational/ educational/recreational (57%); 54% and 61% of patients with “very mild” and “mild” TD severity based on CGIS-TD (Clinical Global Impression of Severity of TD), experience moderate to severe impact on their quality of life. Review more key findings from this important ongoing study.
NOTD joins forces with NAMI Citrus County for in-person TD lecture/screening event
Bill Cote, Sr. Director of NOTD, provided a TD Talk to members of the National Alliance of Mental Illness (NAMI), Citrus County, FL on May 14 from 7pm-8pm. The event was held at the county’s local YMCA and included in-person screenings for attendees by psychiatric nurse practitioner Andrew Wargo PMHNP-BC of Concord Health based in Clearwater, FL.
House of Representatives Commemorate Tardive Dyskinesia Awareness Week
Washington, D.C. – Representatives Scott Peters (CA-50), Gus Bilirakis (FL-12), Kevin Mullin (CA-15), and Aaron Bean (FL-4), introduced a resolution in the U.S. House of Representatives to commemorate May 5-11 as Tardive Dyskinesia Awareness Week. Tardive Dyskinesia (TD) is a persistent and potentially disabling involuntary movement disorder that is associated with taking certain medications prescribed to primarily treat mental illnesses. TD affects approximately 750,000 people in the United States, and approximately 65 percent of people with TD have not been diagnosed, making it important to raise awareness about its symptoms.
TD Awareness Week! May 5-11
The 7th annual Tardive Dyskinesia Awareness Week (May 5-11, 2024) is now recognized by all 50 states and the District of Columbia. You can do your part to raise awareness by using the hashtags #Screen4TD #TDAwareness or #TDAwarenessWeek with your social media posts about TD during the first week of May.
Our 3rd trip to Capitol Hill!
On May 2, we visited Washington, D.C. for our third annual Capitol Hill fly in ahead of Tardive Dyskinesia Awareness Week. People living with tardive dyskinesia (TD) and their care partners shared stories with Congressional and Senate offices and their staff about how TD, an involuntary movement disorder associated with use of antipsychotics or anti-nausea drugs, has impacted their lives.
Exhibited at Psych Congress’ NP Institute in San Diego (March 20-22, 2024)
We had a very productive and educational time at Psych Congress’ NP Institute in San Diego. We met some caring, passionate psychiatric nurse practitioners who were very interested in how we can support their TD patients! NOTD also debuted “Shake, Rattle, and Rock: Helping Children Understand the Challenges of Having a Loved One with Tardive Dyskinesia.”
A huge thank you to our Creative Director, Ruth Ann Rich. She and her son were the driving force behind the creative story for our soon to be released children’s book. We hope this book will help kids understand their loved one’s TD and to especially know that they are not alone. Many children have parents, grandparents and other loved ones with TD.
Kathleen A. Shea’s memoir, “Catastrophic Withdrawal,” describing how rapid quetiapine reduction dramatically altered her life is available in Kindle and paperback versions. While she is best known for starting NOTD, tardive dyskinesia is only part of her story. Her book has been read by individuals from the U.S., Canada, UK, Ireland, Italy, France, Germany, Japan, Israel, Greece, Malaysia, the Philippines, Australia, and New Zealand.
We will be traveling to San Francisco for the annual meeting of the American Psychiatric Association. We will be raising awareness with psychiatric practitioners of the real impact TD has on their patients and the support NOTD can provide their patients with TD. If you’re a healthcare provider and will be attending, please stop by our Booth #2066 (near the Neurocrine Biosciences and Teva Pharmaceuticals exhibits). Hope to see you there!
TD Awareness Week! May 1-7
The 6th annual Tardive Dyskinesia Awareness Week (May 1-7, 2023) is now recognized by all 50 states and the District of Columbia. You can do your part to raise awareness by using the hashtags #TDAwareness or #TDAwarenessWeek with your social media posts about TD during the first week of May.
Our 2nd trip to Capitol Hill!
On April 26th, we visited Washington, D.C. for our second annual Congressional fly in. People living with tardive dyskinesia (TD) and their care partners shared stories with 15 Congressional offices and their staff about how TD, an involuntary movement disorder associated with use of antipsychotics or anti-nausea drugs, has impacted their lives.
We’ll be returning to Washington, DC to advocate for TD!
NOTD will travel to Washington, D.C., the last week of April to raise awareness regarding TD. This year we will be bringing 7 people with TD and their caregivers to share their stories about how TD has impacted multiple aspects of their lives.
NOTD’s 3rd Birthday!
October 30, 2022 was our birthday! Thank you for all your support as we advocate, educate and raise awareness of this debilitating, medication-induced movement disorder. If you’d like to see highlights of the past 3 years, visit: http://facebook.com/TDHelp
NOTD Exhibits at NEI Congress
To raise awareness of TD and NOTD’s mission, we exhibited at the Neuroscience Education Institute (NEI) Congress in Colorado Springs from Nov. 3-6. We had the opportunity to interact with a number of psychiatrists and movement disorder specialists very interested in helping those with TD.
NOTD Exhibits at AAPA Annual Conference
From May 21-23, 2022, the National Organization for Tardive Dyskinesia exhibited at the American Academy of Physicians Associates Conference in Indianapolis. This meeting was attended by 2,900 Physician Assistants/Associates and PA students. Mental health was a predominant theme of the conference — the opening session featured Jane Pauley and gymnast Simone Biles who shared their inspiring stories of overcoming mental challenges and reducing the stigma associated with mental illness.
TD Symptom Tracker App
NOTD is proud to announce that our one-of-a-kind smartphone app to track TD Symptoms is now available in the Apple App Store (for iPhone, iPad) and the Google Play store (for Android). This app makes it easy to record your involuntary movements and chart the progress of any TD treatments. You can also keep track of sleep, stress and even caffeine intake so you can monitor the effect of TD triggers.
It’s HIPAA compliant and encrypted so you can feel confident that your data is secure. To download it now, visit the Apple App Store or Google Play Store.
“Treatment of Tardive Syndromes” webinar
We invite you to learn about your options for managing TD. The highly-accredited Dr. Stewart Factor, Director of the Movement Disorders Clinic at Emory University (with a passion for tardive syndromes research) discussed medication, over-the-counter remedies and surgical options to reduce the unintentional, uncontrollable movements of TD. View our webinar here!
TD Medical Cards
These are helpful when traveling or anytime you are in a situation where your movements may be questioned. If you would like a plastic card indicating that you have TD and describing TD for your wallet, or a lanyard plus a card to conveniently display it, please email us at info@tdhelp.org with the subject line “TD Card/Lanyard”. Include your name and address in the email and it will be mailed to you, free of charge. (To see a picture of the eye-catching card, visit: https://tdhelp.org/resources/ and scroll about 3/4 of the way down the page.)