MJD Foundation

Genetic Roadshow 2017

GR2017 presenters  GR2017 group photo  GR2017 participant

MJD Genetic Roadshow a great success

In May 2017, the MJDF in collaboration with VIC Clinical Genetics Services toured 6 locations in 5 days to deliver 9 genetic education workshops on Machado Joseph Disease to 119 health professionals. Funded by the federal Dept of Health, the team visited: Elcho Island, Nhulunbuy, Groote Eylandt, Katherine, Ngukurr and Darwin.

MJD is a rare, very disabling genetic condition occurring at high rates across remote communities in the NT. Detection and management of the condition may require referral to a range of primary health specialists including, genetics, neurology, respiratory, internal medicine, rehabilitation and ophthalmology during the patient's lifespan. Continuity of primary health care is a perennial issue for these patients, as MJD is not well known outside of the region. Adding further complexity, an outpatient model of specialist service provision dominates in the NT, generally requiring the patient to travel to Darwin or Alice Springs.

Short term staffing, segregated provision of Primary Health Care services (Aboriginal Medical services or NT Government clinics) and limited opportunities for continuing Professional development (CPD), mean that health care professionals working in remote NT clinics often require additional support to know when referral is necessary, and stay abreast of appropriate management strategies. In the case of genetic conditions with high transfer rates such as MJD it is vital that health professionals are well informed and able to support patients.

The workshops were exceptionally well received with participants scoring a very high level of satisfaction with the sessions.