EMALEX CLINICAL TRIAL
Please see information from TAA re: Emalex Clinical Trial
Emalex Biosciences Inc is pleased to provide you with an update regarding the ongoing
Phase 2b clinical trial for Ecopipam
(EBS-101-CL-001)
Currently 132 subjects of the planned total of 150 subjects have been enrolled into the study.
As Emalex nears the close of enrollment, they encourage any parents/caregivers with interest in this study to contact their nearest study center for more information.
A full list of participating study centers may be found at www.clinicaltrials.gov.
Emalex hopes to see the full enrollment target be reached in approximately one month.
NEW TOURETTE DISORDER CHILD STUDY
TAA Long Island has received information about recruitment for a new study for children between the ages of 6-17 years old.
To whom it may concern,
Children and adolescents who suffer from Tourette Disorder often experience tics, or sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.
Tics associated with TD become most prominent in early childhood and worsen progressively, showing greatest tic severity at 10 years of age.
Our site is currently conducting a TD study in the children and adolescents population of ages 6-17. The primary objective of this trial is to evaluate the long-term treatment of TD with the study medication. Please visit the following website to find out more information about this exiting study https://www.tourettesstudy.com/
The benefits of participating in research studies can include: access to new medications, expert medical care, medical tests and getting lab work completed free of charge. By participating in this research study you can potentially discover a new treatment for your patients TD.
Our site is located in the heart of Manhattan and will cover the costs of your patients commute to and from our site. We would also compensate patients for each of the 17 in person and 6 phone call visits. To find out more information about the premier clinical research site in New York City please click http://manhattanbehavioralmedicine.com. Or email us at recruitment@nymbm.com or call us at 646-678-4073.
Thank you!
Scheduling and Patient Recruitment Team at MBM PLLC
Manhattan Behavioral Medicine, PLLC
2 West 46 street suite 405 (4th floor)
New York, New York 10036
Tel (646) 678-4073 Fax (646) 850-6164
WEILL CORNELL ORAL ORTHOTIC STUDY
Weill Cornell is recruiting children and young adults ages 7-25 with tics or Tourette for an oral orthotic study. The study includes a total of 5 visits, and participants will be fitted for an oral orthotic appliance.
SLEEP-WAKE RHYTHMS SURVEYS IN CHILDREN AND ADULTS WITH TOURETTE DISORDER
Researchers at UCLA are recruiting children and adults with Tourette' Disorder or other chronic tic disorders to participate in a survey assessing sleep-wake rhythms. We have separate surveys for adults, and children/parents.
Parent and Child Survey (Ages 10 to 17): The parent and child survey will take approximately 45 minutes to complete and will require both your and your child’s participation. It will include questions about your child’s demographics, medical/psychiatric history, tic severity and course, sleep-wake rhythms, general sleep habits, emotional functioning, and behavioral patterns. Upon completion of the survey, you will be able to enter into a drawing to receive a $50 Visa gift card. However, survey completion is not required to participate in this drawing.
Parent and Child Survey Link:
https://www.ctrc.medsch.ucla.edu/redcap/surveys/?s=LP3RD7AWEE
Adult Survey (18 years and older): The adult survey will take approximately 30 minutes to complete. It will include questions about your demographics, sleep-wake rhythms, general sleep habits, tic severity and course, tic-related impairment, emotional functioning, and behavioral patterns. Upon completion of the survey, you will be able to enter into a drawing to receive a $50 Visa gift card. However, survey completion is not required to participate in this drawing.
Adult Survey Link:
https://www.ctrc.medsch.ucla.edu/redcap/surveys/?s=NARMNLK8K8
LONG ISLAND TA MEMBERS ARE INVITED TO PARTICIPATE IN AN ONLINE TIC TREATMENT STUDY FOR ADULTS
Hannah Reese, Ph.D., of Bowdoin College, Sabine Wilhelm, Ph.D. of Massachusetts General Hospital, and Alan Brown of NYC are conducting an online treatment research study for adults with tics disorders. The study aims to compare two online treatments for adults with tics: a mindfulness-based program (Mindfulness-based Intervention for Tics or MBIT) and a psychoeducational and supportive therapy program (Tic Information and Coping Strategies or TICS).
Both programs are 8 weeks long and consist of a 90-minute weekly group videoconference, and online questionnaires.
MBIT focuses on cultivating awareness of urges to tic and developing a different relationship to those urges through meditation and other mindfulness practices. TICS focuses on learning more about tics, practicing a range of strategies for coping with tics (e.g., relaxation, effective communication), and discussing challenges commonly experienced by individuals with tics.
Participants will be randomly assigned to receive one the two treatments. Assessments will also be conducted before and after the program.
Because the study is being conducted entirely online, participants can live anywhere in the United States.
They are currently recruiting participants.
More information can be found here: https://research.bowdoin.edu/tic-treatment-study/ or by calling research assistant, Jin Shin, at (617) 724-4354.
TOURETTE SYNDROME RESEARCH STUDY
We would like to take this opportunity to share information about a new Tourette Syndrome research program that may be of interest to you. In the ARTISTS program, doctors are evaluating the efficacy, safety, and tolerability of TEV-50717 in children and adolescents with Tourette syndrome.
TEV-50717 is an investigational medication. Investigational medications are not approved by the U.S Food and Drug Administration.
To pre-qualify for the ARTISTS 1 and ARTISTS 2 studies, patients must:
• Be 6 to 16 years of age
• Exhibit tics or have been diagnosed with tics and / or Tourette
syndrome
• Have a caregiver willing to comply with all study-related procedures
• Not have a diagnosis of bipolar disorder or psychosis, including
schizophrenia
All eligible participants will receive either TEV-50717 or placebo (inactive substance), study-related medical exams, and study related laboratory tests at no cost. In addition, participants may be reimbursed for study-related travel.
After the end of the study, all participants who complete the ARTISTS 1 and ARTISTS 2 study may have the opportunity to enroll in a year-long study, if eligible, in which all participants receive TEV-50717.
For more information, please visit www.artiststudyts.com to learn more and see if your child may qualify.
CLINICAL RESEARCH FOR TOURETTE
T-Force Gold is a clinical research study for children and adolescents with Tourette Syndrome.
Neurocrine Biosciences invites boys and girls aged 6 to 17 who have a diagnosis of Tourette Syndrome to see if they may qualify for the T-Force Gold Study. The primary purpose of this research study is to determine the effectiveness, safety, and tolerability of an investigational medication for Tourette syndrome.
Each child will be evaluated to determine his or her eligibility to participate in the research study. All who qualify will receive the study medication and study-related medical exams and laboratory tests at no cost. Compensation for time and travel may also be available.
If you have friends or family who are also affected by Tourette Syndrome, we encourage you to pass this information along. We encourage you to talk to your child’s doctor or contact the participating physician in your area,
Visit TForceGold.com or ClinicalTrails.gov to learn more
RESEARCH OPPORTUNITY: NEEDS ASSESSMENT STUDY
A new research study is being conducted in the URMC Division of Neurology that is recruiting both adults and parents of children with Tic Disorders (i.e. Tourette Syndrome, Chronic Motor Tic Disorder, Chronic Vocal Tic Disorder). The Principal Investigator is Peter E. Morrison, DO, a physician in the Division of Neurology.
Eligible participants include:
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Adults with a Tic Disorder
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Parent of a child with a Tic Disorder
The purpose of this study is to learn about the needs (both met and unmet) in the Tic Disorder Community. This study involves completing an online survey, which should take approximately 20 minutes to complete. The link to the survey is below. We would appreciate your voluntary effort in completing the survey. Your input will help us learn how to best serve both adults and children with Tic Disorders.
If you have any questions, please contact: Alyssa Thatcher, M.S. at (585) 276 – 5966.
SCIENTISTS IDENTIFY THE FIRST STATISTICALLY SIGNIFICANT GENETIC RISK FACTORS FOR TOURETTE SYNDROME
Data Collected from 2,434 Tourette Cases and More than 4,000 Controls Reveal the First Statistically Significant Genetic Risk Factors for Tourette Syndrome.
The Tourette Association of America is proud to announce that conclusive findings of TAA-funded research investigating highly complex genetic risk indicators for TS and related disorders were published today in the prestigious scientific journal Neuron. This major research milestone represents a large-scale collaborative effort involving dozens of clinicians, geneticists and advocacy leaders from around the world, and is the first to identify, with genome-wide significance, two definitive genetic defects underlying the development of Tourette Syndrome and related neurological disorders.
In the study, scientists from the Tourette Syndrome Association International Consortium for Genetics (TSAICG) analyzed and compared the genes of 2,434 individuals with Tourette Syndrome to 4,093 people without the disorder in order to decipher underlying genetic contributors.
As reported in Neuron, two prominent gene abnormalities have been definitively shown to be present in TS: deletions (or loss of one copy) of the Neurexin-1 gene (NRXN1), and duplications (or an extra copy) of a different gene called Contactin-6 (CNTN6). Approximately one out of every 100 TS cases studied carries one of these copy-number variants, indicating a significant contribution to the genetic architecture of Tourette Syndrome.
“The genetic evidence presented in Neuron represents a major breakthrough in our understanding of how Tourette develops and who is at increased risk for developing the disorder,” said John Miller, President and CEO of Tourette Association of America. “The Tourette Association of America is enormously proud to have been the facilitating partner for this important discovery by the TSAICG consortium. Today, we are one giant step closer to fulfilling our mission to drive improved quality of life for all who are affected by Tourette and other tic disorders through research, support, and awareness.”
