This will establish a statewide MND Register requiring diagnoses to be formally notified and recorded.
It will create for the first time a system capable of tracking MND, identifying patterns and supporting research into this cruel disease.
The framework has been developed in consultation with Australia's foremost MND specialist Professor Dominic Rowe AM from Macquarie University with the expert assistance of NSW Health and Parliamentary Counsel.
The campaign began after concerns were raised about unusually high rates of MND in parts of regional New South Wales, including communities within the Murray electorate.
"In some communities we are seeing rates of MND that simply cannot be ignored," Mrs Dalton said.
"Yet until now there has been no mechanism to systematically identify cases, monitor trends or investigate whether there are common factors linking them.
"You cannot solve a problem if you are not collecting the evidence.”
Prof Rowe said one of the biggest obstacles in research has been the absence of systematic surveillance data.
“Despite decades of research, we still know remarkably little about why most people develop MND," he said.
“To the best of my knowledge, no jurisdiction anywhere in the world has established a legislative notification and surveillance framework for Motor Neurone Disease of this kind
“That makes this a genuine world first.”
Mrs Dalton paid tribute to Prof Rowe’s advocacy and said the proposed framework would allow NSW to move beyond simply counting deaths and begin building a much clearer picture of the disease.
"This is about giving researchers the tools they need to ask better questions and hopefully find better answers,” Mrs Dalton said.
“We have mortality data. We have isolated research studies.
“What we have never had is a mechanism that allows us to consistently identify cases, track disease incidence and build a comprehensive picture across an entire population."
“This framework creates the foundation that has been missing."
Prof Rowe also paid tribute to MND patients, carers, advocates and clinicians who had helped drive the campaign.
“This has never been about politics. It has been about giving families hope that we can better understand this disease and one day prevent others from suffering the same heartbreak.
“NSW now has the opportunity to lead the world in the way MND is monitored, researched and understood.
“Today is a major step forward in the global fight against MND.”
