Proposed Parkinson’s registry could foster work toward treatments and a cure

      Missouri could be a leader in creating a knowledge base to help understand and fight Parkinson’s disease, under a bill approved by a House committee.

      House Bill 822 would create the Parkinson’s disease registry to collect general information about people diagnosed with that disease and to be kept by the University of Missouri.  It would be used to identify commonalities between patients that could lead to a greater understanding of who is likely to develop Parkinson’s, and help to develop preventative measures, treatments, and perhaps even a cure.

      Bill sponsor Travis Smith (R-Dora) told the House Committee on Children and Families, “Little is known about Parkinson’s.  It is distributed among different population groups and the patterns of the disease are changing over time.  Knowing who has Parkinson’s will also assist researchers in acquiring more information about the causes of Parkinson’s, [which are] believed to be a combination of environmental and genetic factors.”

      “The whole idea with [HB 822] is:  we collect this data and we start learning from it and we prevent this happening to future generations.”

      Smith’s inspiration for carrying the proposal was a family friend, Ann Dugan, who often joined his family for dinner each year on Thanksgiving.

“[Ann] got Parkinson’s, and every year I saw her progress and get worse and worse and worse.  The hardest part for her was her mind was still 100% intact.  She was a brilliant lady, had a master’s degree, but her body functions – she could no longer control even her movement.  It just broke my heart and I could see how much frustration she was in year after year.”

      The registry would be part of a larger national effort in coordination with the Centers for Disease Control (CDC), which has created a National Neurological Conditions Surveillance Program.  That program would gather data on Parkinson’s that could be used by researchers internationally, as they look for a cure.

      Before it begins collecting data, however, it needs several states to be online.   Julie Pitcher with the Michael J. Fox Foundation for Parkinson’s Research said Missouri could be the fifth state in the nation with such a registry. 

      “We are on a quest to get better data,” Pitcher told the committee.  “Patients really do want to be part of this to look for long-term effects, genetic predispositions, biomarkers, and other reasons that they may be living with Parkinson’s, and for future generations.”

      Roughly 20-thousand to 30-thousand Missourians are believed to have Parkinson’s.  Nationally that number is about 1.2-million, and Pitcher said the rate of diagnosis is expected to increase.

“There is a rise and we don’t know why.  We do know that many veterans are exposed to toxic burn pits and other chemicals.  There are folks that work in fields and are exposed to very, very toxic chemicals – herbicides like paraquat – and then we are expecting a larger number of folks … those who were in their 20s fighting in Afghanistan who we believe are now in their 40s and we expect more diagnoses coming as they age into their 50s.  It usually presents itself in their 50s but we are seeing more, younger members, particularly women, are now being diagnosed younger.”

Researchers hope the registry would help answer the question as to why an increase in instances of Parkinson’s diagnoses is occurring. 

The registry would not include personally identifying information and patients could choose not to be included at all.  Smith said he made sure that was the case before moving forward with the proposal.

“That’s one thing I’ve always been super concerned about, is people’s privacy.  This will not have people’s names on it.  This will basically be like HIPAA where all their information is hidden away … the University of Missouri will collect this data and then start working with other universities and hopefully come up with solutions.”

      He said what it would include are things like, “What your age group is; geographical – where have you been, where have you been, what have you done; occupation – were you in the military, were you a farmer, were you a teacher, were you a lawyer.  It’s going to be very broad.”

      The committee voted 10-0 to advance that bill to another committee, and from there it could go on to the full House.