The Centre for Brain Research Neurogenetics Research Clinic (CBR-NRC) aims to record longitudinal assessments of patients with rare neurogenetic diseases to understand better the natural history of these diseases. The assessments used will themselves be studied in order to develop sensitive tools for monitoring disease progression.
Information obtained from the assessments will be used to develop and advise patients and their treating clinicians on the best treatments in keeping with the current literature or from first principals or be used to define the patients’ individual phenotypes in order to define the clinical manifestations of neurogenetic diseases.
The measures used may be developed in collaboration with international research partners and the data shared with them.
The University of Auckland’s Clinical Research Centre within the Faculty of Health and Medical Research is physically where the study will take place. Organisationally the study takes place within the University’s Centre for Brain Research with management support from the CBR and from the University’s research office.
The Duncan Foundation funding enables Physiotherapy and Occupational therapy to be part of the clinical team involved with the Friedreich Ataxia population providing assessment and condition-based advice, and to expand the regional therapy team resources provide a collaborative network of therapists who are able to work with therapists, local to the person with the condition, to undertake the recommended therapy interventions.
How do I apply?
This will initiate an alert to the Duncan foundation CEO, who will then make contact with you and allocate you to your regional clinician who will contact you directly to schedule an assessment. Funding will be given to people on a ‘first come first served’ basis to applicants who meet the above criteria.