In Germany, the HealthE-RND project is carried out by the Huntington Center at the University Hospital in Ulm. This is a special outpatient clinic within the Department of Neurology and is lead by Prof. G. Bernhard Landwehrmeyer. It has extensive knowledge, expertise and experience in the care of Huntington’s Disease patients and in the clinical research into the disease.

Moreover, the Huntington Center is a member of the European Huntington‘s Disease Network (EHDN) and hosts the Central Coordination of the EHDN. It is also an expert center of the European Reference Network for Rare Neurological Diseases (ERN-RND).

The main focus of the Huntington Center is the consultation, care and treatment of Huntington patients and their families.

 

As an outpatient clinic, it offers genetic counselling and testing as well as ongoing medical care and support services for persons with HD and their families provided by a multidisciplinary team comprised of neurologists, a psychiatrist, a psychologist, a dietician, a social worker and study nurses.

It also offers clinical inpatient care with inpatient hospitalization for acute medical or behavioral problems covering clinical evaluation, diagnostic and therapeutic interventions provided by a multidisciplinary team.

With respect to clinical research, the Huntington Center in Ulm is involved in numerous international therapy and observational studies and international consortium projects. Some exemplary studies and projects are:

  • Observation studies: Enroll HD, HD Clarity, HD-Voice, Keyboard study, IONIS-HTTRx Natural History 
  • Intervention studies: IONIS-HTTRxOLE, IONIS-HTTRxGenerationHD1, Pace HD, Dysphagia study, Einstein study, Structured intervention after positive genetic testing for patients and their relatives 
  • International Consortium Research Projects: DOMINO-HD study (Multi-Domain Lifestyle Targets for Improving ProgNOsis), HEALTHE-RND (European eHealth Care Model for Rare Neurodegenerative Diseases)

In addition, the Huntington Center is also engaged in basic science research projects covering for example the following topics:

  • DNA instability
  • huntingtin normal function
  • biomarker studies
  • neuroinflammation in HD
  • post-mortem examinations

TEAM

Prof. Dr. G. Bernhard Landwehrmeyer, MD, FRCP
Principal Investigator | Neurologist
Health-RND Co-Coordinator

Med. Univ. Dr. Alzbeta Mühlbäck, MD
Sub-Investigator | Psychiatrist
Health-RND Operational Manager

Wiebke Frank, MSc
Sub-Investigator  
PhD candidate | Psychologist

Nana Kovacevic
Project Management