Background
Our research group focuses on the consultation and treatment of patients with Tourette syndrome and other tic disorders as well as on clinical research on various aspects of the disease including clinical features, treatment options and underlying causes.
For this purpose, we offer a highly specialized Tourette outpatient clinic, in which more than 2000 children and adults have been advised and treated in the past 20 years. This makes our Tourette’s clinic the largest of its kind in Germany. The consultations are open to patients of all ages and include diagnostics and the possibility of obtaining a second opinion from a Tourette specialist. The consultation addresses all aspects of tic disorders as well as therapy with all established, but also experimental treatment approaches. In addition to psychotherapeutic and drug therapy, the range of treatment includes the possibility of surgical treatment using deep brain stimulation (in cooperation with the MHH Clinic for Neurosurgery). A special focus is the treatment with cannabis-based medicine.
In addition, we are constantly conducting a large number of scientific studies on clinical aspects, new therapeutic approaches and the causes of Tourette syndrome. Under the direction of Prof. Kirsten R. Müller-Vahl, 15 doctoral theses have been completed in recent years. Currently, we have 14 doctoral students in our research group. Prof. Müller-Vahl has been a leading contributor to the national, European and American guidelines for the treatment of Tourette syndrome for many years. In recent years, the research group has been involved in numerous international cooperations investigating different aspects related to Tourette syndrome including
- GTS COST Action BM0905: European Network for the Study of Gilles de la Tourette Syndrome, EU Framework Programme COST (European Cooperation in Science and Technology)
- EMTICS: European Multicentre Tics in Children Studies, FP7- HEALTH-2011 No. 278367
- TS-EUROTRAIN: Marie Curie Initial Training Network: FP7-PEOPLE-2012-ITN No. 316978 (Interdisciplinary training network for Tourette Syndrome; structuring European Training capacities for neurodevelopmental disorders)
As president of the European Society for the Study of Tourette Syndrome (ESSTS), Prof. Müller-Vahl is responsible for the organization of international congresses, the development of treatment guidelines, and further education and information on Tourette syndrome. A close cooperation with national and European self-help groups is particularly important to us. Prof. Müller-Vahl is the spokeswoman of the scientific advisory board of the Tourette Society Germany (Tourette-Gesellschaft Deutschland e.V.,TGD).
Overall goals
Our patients are the focus of our thinking and acting. Therefore, we strive to offer the best possible consultation and therapy within the framework of the Tourette specialist consultation. However, since the causes of Tourette syndrome are still only partially known today and not all patients benefit from and tolerate the currently available treatments, we regularly conduct studies with the aim of better characterizing the clinical picture of the disease, better understanding the causes of the disease and finally finding better treatment options.
Current and previous studies have therefore dealt with very different aspects of the disease. Our studies range from phenomenological studies such as studies on quality of life, tic suppression, premonitory urges, free will and comorbid diseases such as rage attacks and self-injurious behavior, studies exploring the potential causes of Tourette syndrome such as genetics, epigenetics, immunological aspects and imaging studies on different transmitter systems of the brain to treatment studies which explore the effectiveness and efficacy of internet-based behavioral therapy, cannabis-based medicines and deep brain stimulation.
Currently, special emphasis is put on research on the efficacy and safety of cannabis-based medicines and endocannabinoid modulators in the treatment of tics and typical comorbid diseases of Tourette syndrome such as ADHD, OCD, depression, anxiety, sleep disorders, self-injurious behavior and rage attacks as well as studies on the role of the endocannabinoid system in the pathophysiology of the disease.
Another important current research focus is the differentiation from functional (dissociative) movement disorders. To date, the diagnosis of Tourette syndrome and other tic disorders is only possible clinically on the basis of a medical history and examination. An increasing number of patients are currently presenting in our clinic with a functional disorder with tic and/or Tourette-like symptoms, either exclusively or in combination with Tourette syndrome. Therefore, another focus of our studies is the differentiation of functional movements from tics, the investigation of the causes and the treatment of this movement disorder.
It has long been known that tics are more common in some families than in others. Until today, however, no specific genes (=hereditary disposition) could be identified that actually causes tics. The aim of this study is to discover the genes responsible for the inheritance of tics. With your participation, you will contribute to uncovering the causes of Tourette syndrome so that new therapeutic options can be developed in the long term.
Funding: Collaborative Genomic Studies of Tourette Disorder (TIC-Genetics): National Institute of Mental Health (NIMH): 1R01MH115958-01
Participation in the study: Only “children” can participate in this study together with their parents (so-called "parent-child trios"). The child must have a Tourette syndrome or another chronic tic disorder, but the parents must have no history of tics. There is no age limit for participation, i.e. adult "children" of any age (even >18 years) can participate, provided that both parents are willing to participate in the study, too.
Contact for participation and for further questions: 0511-532-5524 or email: tourette-studien@mh-hannover.de (subject "TicGenetics").
This study is investigating whether the drug ecopipam is effective and safe in the treatment of children and adolescents aged 6 to 17 years with Tourette syndrome. Ecopipam is a so-called selective dopamine D1 receptor blocker, which sets it apart from the majority of drugs currently used to treat tics, which are dopamine D2 receptor blockers. This outstanding feature is believed to make ecopipam a more effective and better tolerated drug.
This study is funded by Emalex Biosciences, Inc. and is currently being conducted in numerous countries and centers worldwide.
Study participation: This study is open to children and adolescents with Tourette syndrome aged 6 to 17 years.
Contact for participation and for further information: 0511-532-5524 or email: tourette-studien@mh-hannover.de (subject "Ecopipam").
For some years, there has been increasing evidence that Tourette syndrome can be successfully treated with cannabis or cannabis-based medicine. At the beginning of 2018 a large multicenter study was started at our clinic to investigate the efficacy of the cannabis extract nabiximols (SATIVEX®) for the treatment of patients with chronic tic disorders and Tourette syndrome. SATIVEX® is a mouth spray that is already approved in Germany for the treatment of spasticity in patients with multiple sclerosis. Funding: DFG: GZ MU 1527/3-1. Recruitment has already been completed. Participation in the study is therefore no longer possible.
Resulting publications:
- Jakubovski, E., Pisarenko, A., Fremer, C., Haas, M., May, M., Schumacher, C., Schindler, C., Häckl, S., Aguirre, L., Koch, A., Brunnauer, A., Cimpianu, C., Lutz, B., Bindila, L. & Müller-Vahl, K. (in press). The CANNA-TICS Study Protocol: A randomized multi-center double-blind placebo controlled trial to demonstrate the efficacy and safety of nabiximols in the treatment of adults with chronic tic disorders. Frontiers in psychiatry. DOI
In the treatment of tics, "Comprehensive Behavioral Intervention for Tics" (CBIT) - also known as Habit Reversal Training - is recommended as the therapy of choice. In Germany, this therapy is not available to all patients due to a lack of qualified therapists. In order to close this gap in treatment providers, we have developed a purely internet-based CBIT variant in the form of a standalone online therapy platform (iCBIT), which patients can use from home without having any therapist or treatment provider. The effectiveness of this internet-based behavioral therapy (iCBIT) is currently investigated in a randomized controlled clinical trial. Funding: BMBF: 01KG1421, 2015-2020. Recruitment has already been completed. Participation in the study is therefore no longer possible.
Resulting publications:
- Jakubovski E, Reichert C, Karch A, Buddensiek N, Breuer D, Müller-Vahl K. The ONLINE-TICS Study Protocol: A Randomized Observer-Blind Clinical Trial to Demonstrate the Efficacy and Safety of Internet-Delivered Behavioral Treatment for Adults with Chronic Tic Disorders. Front Psychiatry. 2016 Jun 30;7:119. doi: 10.3389/fpsyt.2016.00119. PMID: 27445874; PMCID: PMC4928510. DOI
Misophonia describes a phenomenon in which those affected cannot tolerate the mouth and nose noises of other people (e.g. swallowing or lip smacking) or can only tolerate them under considerable psychological distress. These sounds typically trigger anger, irritation or disgust. Misophonia is currently very little researched and does not represent an official diagnosis.
In a collaborative study with the Clinic for Psychosomatics of the MHH, the University of Leipzig and USUMA GmbH, we are currently conducting a population-wide survey study to investigate the frequency of misophonia in the German population. To ensure the representativeness of our survey, households are systematically selected and addressed. Participation on one's own initiative is not possible.
Scientific collaborations
- Department of Psychosomatic Medicine and Psychotherapy
- Clinical Research Center (CRC) Core Facility
- Department of Neurosurgery
- Department of Neurology
- Institute of Biostatistics
- Institute of Clinical Pharmacology
- Department of Nuclear medicine
- Section Biostatistics at Paul-Ehrlich-Institute
- Department of Neuropsychology at kbo-Inn-Salzach-Klinikum, Wasserburg am Inn
- Department of Psychiatry and Psychotherapy, Ludwig-Maximilians-University Munich
- Lipidomics/Mass Spectrometry Facility, Institute for Physiological Chemistry, at Johannes Gutenberg University Mainz
- Department of Psychiatry, Psychotherapy and Psychosomatics, University Hospital Aachen
- Department of Paediatric and Adult Movement Disorders and Neuropsychiatry, Institute of Neurogenetics, University of Lübeck
- Department of Child and Adolescent Psychiatry, University Dresden
- Department of Psychiatry and Psychotherapy, University of Cologne
- Department of Psychiatry and Psychotherapy, Albert-Ludwigs-Universität Freiburg
Cooperation partners in the TicGenetics study
- Rutgers University (Gary Heiman/Jay Tischfield).
- Children’s Hospital of Philadelphia (Lawrence Brown).
- University of Iowa (Samuel Kuperman).
- Columbia University (Dorothy Grice).
- Seattle Children’s Hospital (Samuel Zinner)
- New York University/ Nathan Kline Institute (Barbara Coffey and Benett Leventhal)
- Cincinnati Children’s Hospital Medical Center (Donald Gilbert)
- University Medical Center Groningen, Netherlands (Pieter Hoekstra)
- Yulius Mental Health, Rotterdam, Netherlands (Jeroen Heijmens Visser)
- De Bascule, Amsterdam, Netherlands (Chaim Huyser)
- University Clinic Hamburg-Eppendorf, Germany (Alexander Münchau)
- Technical University Dresden, Germany (Veit Roessner)
- University of Ulm, Germany (Andrea Ludolph)
- Guys and St. Thomas Foundation Trust, London, UK (Tammy Hedderly)
- Institute of Psychiatry London, UK (Isobel Heyman)
- University of Sevilla, Spain (Pablo Mir)
- Hospital Clinic, Barcelona, Spain (Astrid Morer)
- Region Hovedstaden, Copenhagen, Denmark (Kerstin von Plessen)
- Yonsei University Severance Hospital (Dong-Ho Song & Keun-Ah Choen)
- Kwandong University MyongJi Hospital (Jeung-Eun Song)
- Hallym University Sacred Heart Hospital (Hyun-Joo Hong)
- Seoul Metropolitan Eunpyeong Hospital(Eun-Joo Kim)
- Ilsan Hospital (National Health Insurance Co.) (Young-Key Kim)
- Institute for Children’s Social Development (Yun-Joo Koh)
Cooperation partners within the EMTICS study
- UMCG, Prof. Pieter Hoekstra
- UNIBA, Dr. Maura Buttiglione
- UCL, Prof. Anette Schrag
- LMU, Prof. Norbert Müller
- Cytolab, Mr. Adrian Urwyler
- ISS-GL, Dr. Roberta Creti
- ISS-RC, Dr. Giovanni Laviola
- ISS - PR, Dr. Paolo Roazzi
- TUD, Prof. Veit Roessner
- DUTH, Prof. Peristera, Paschou
- ProImmune, Dr. Nikolai Schwabe
- GSK (NVD), Dr.Immaculada Margarit Y Ros
- SCMCI, Prof. Alan Apter
- UniROMA, Prof. Francesco Cardona
- APD, Dr. Pascale Verstappen
- QMUL, Dr. Ute Christiane Meier
- UNICT, Prof. Renata Rizzo
- concentris, Dr. Sara Stöber
- VCAH, Dr. Zsanett Tàrnok
- SAS, Dr. Pablo Mir
- UZH, Prof. Susanne Walitza
- FCRB, Dr. Astrid Morer
- RegionH, Prof. Kerstin von Plessen
- GSTT, Dr. Tammy Hedderly
- ASL-Bari, Dr. Cesare Porcelli
- UZL, Prof. Alexander Münchau
- DH-PHE, Dr. Androulla Efstratiou
- AMC, Dr. Chaim Huyser
Cooperation partners in the TS-EUROTRAIN study
- DUTH Greece (Coordinator)
- deCODE Iceland
- Semmelweis Hungary
- KC Denmark
- UU Netherlands
- RUNMC Netherlands
- UMCG Netherlands
- UULM Germany
- BI PHARMA Germany
- VU University Amsterdam VU Netherlands
- Hungarian Academy of Sciences IOE Hungary
- Magnetic Resonance Unit, Max Planck Institute for Human Cognitive and Brain Sciences, Leipzig MPI Germany
- Massachusetts General Hospital, Harvard Medical School Harvard-MGH USA
- Rensselaer Polytechnic Institute RPI USA
- Tourette-Gesellschaft Deutschland TGD Germany
- Netherlands Foundation of patients with TS NFT Netherlands
Cooperation partners in the “Position Statement on the Use of Medical Cannabis and Cannabis-Based Medicines for Tourette Syndrome and Tic Disorders” of the Tourette Association of America (TAA)
- Sharon Anavi-Goffer, PhD (University of Aberdeen, UK)
- Michael Bloch, MD (Yale University)
- Cathy Budman, MD (Long Island Center for Tourette & Related Disorders)
- Barbara Coffey, MD MS (University of Miami)
- Keith Coffman, MD (Children’s Mercy Kansas City)
- Joohi Jimenez-Shahed, MD (Baylor College of Medicine)
- Irene Malaty, MD (University of Florida Center for Movement Disorders and Neurorestoration)
- Kirsten Muller-Vahl, MD (Hannover Medical School)
- Paul Sandor, MD (University Health Network and University of Toronto, Toronto)
- Diana Shineman, PhD (Tourette Association of America)
- John Walkup, MD (Lurie Children’s, Chicago)
- Abraham Weizman, MD (Director of Research Unit, Geha Mental Health Center, Israel)
Cooperation partners in the Tic Disorders and Tourette Syndrome Study Group of the International Parkinson and movement Disorder Society (MDS)
- Donald L Gilbert (Cincinnati Children’s Hospital Medical Center)
- Mark Hallett (National Institute of Neurological Disorders and Stroke)
- Andreas Hartmann (Department of Neurology, Sorbonne Université)
- Andrea Lee (New York Presbyterian/Weill Cornell Medical College)
- Irene Malaty (University of Florida Center for Movement Disorders and Neurorestoration)
- Pablo Mir (University of Sevilla, Spain)
- Alexander Muenchau (University Clinic Hamburg-Eppendorf, Germany)
- Michael Okun (Department of Neurology, University of Florida)
- Tamara Pringsheim (Department of Clinical Neurosciences, University of Calgary)
- Harini Sarva (Department of Neurology, Weill Cornell Medical College)
- David Shprecher (Banner Sun Health Research Institute)
- Harvey Singer (Department of Neurology, Johns Hopkins University)
- Marina AJ de Koning-Tijssen (Department of Neurology, University Medical Center Groningen)
- Yulia Worbe (Department of Neurology, Hôpitaux de Paris)
ONLINE-TICS
Randomized observer blind clinical trial to demonstrate the efficacy and safety of internet-delivered behavioral treatment for adults with tic disorders, BMBF: 01KG1421, (2015-2020):€ 1.133.569,20
Study completed.
Randomized double-blind placebo controlled trial to demonstrate the efficacy and safety of nabiximols in the treatment of adults with chronic tic disorders, DFG: GZ MU 1527/3-1 (2016-2020): € 1.362.554,00 und DFG: GZ MU 1527/3-2 (2020-2022): € 573.579,00
Study completed.
Subproject: „Fitness to drive“: Fahreignung von Patienten mit Tourette-Syndrom während einer Behandlung mit Nabiximols, Almirall Hermal GmbH (2016-2022): € 35.000 (engl. translation: 'Fitness to drive of patients with Tourette syndrome during treatment with nabiximols')
Collaborative Genomic Studies of Tourette Disorder, National Institute of Mental Health (NIMH) 1R01MH115958-01 (2018-2022): $ 117.000,00
Ecopipam (EBS-101-CL-001)A Multicenter, Placebo-Controlled, Double-Blind, Randomized, Parallel- Group, Phase 2b Study to Evaluate the Efficacy and Safety of Ecopipam Tablets in Children and Adolescent Subjects with Tourette’s Syndrome, Emalex Biosciences, Inc. (2019-2020): Total cost per trial subject: € 8,608.56
Research group members
Research group leader
Prof. Dr. Kirsten Müller-Vahl
Managing senior physician
Phone: +49 511 532 5258
mueller-vahl.kirsten@mh-hannover.de
Excellence at a glance: see here
Publications: Pubmed
Secretary
Martina Henning
Phone: +49 511 532 3551
Fax: 0511 532 3187
Phone: +49 176 1532 5389, +49 511 10580 221
Fax: +49 511 532 3187
jakubovski.ewgeni@mh-hannover.de
Research focus:
- Tourette Syndrom
- Misophonie
- Research method Meta-analysis
- Research method Prediction models for treatment success
Publications: Pubmed
Phone: +49 511 532 5524
Fax: +49 511 532 3187
Research focus:
- Tourette-Syndrom
- Functional movement disorder
Title of the dissertation: Internet-induced Tourette's-like symptoms as mass hysteria phenomenon
Publications: Pubmed