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The Advocate Report: Sue Dubman from Massachusetts
What is one way to help accelerate the development of new therapies for Parkinson’s disease (PD)? As Robin Elliott, Executive Director of the Parkinson’s Disease Foundation (PDF) noted in the last issue of this newsletter, it is through “pairing” people with Parkinson’s — trained research advocates — with people in government, science and industry to improve the process that brings us new medicines.
Over the past few years in News & Review, we have profiled several of the 100 individuals from 36 states who comprise PDF’s Parkinson’s Advocates in Research (PAIR) program. One welcome addition to this group of research advocates is Sue Dubman, of Boston, MA.
For the first year after Ms. Dubman received her diagnosis of Parkinson’s in 2008, she said she “floated down the river of ‘de-nial!’” Yet it did not take her long to get involved with helping the Parkinson’s community in a way that powerfully leverages her 15 years of professional experience in government, health, information technology and clinical research. She works with organizations such as the Clinical Data Standards Interchange Consortium (CDSIC) on data standardization — that is, on finding ways to coordinate data collection across research studies testing new therapies.
Ms. Dubman saw an opportunity when she read about PDF’s three-day research advocacy training, the annual Clinical Research Learning Institute. As she describes it, “When I was at the National Cancer Institute, I worked with many patient advocates so I was already familiar with what they do and how important they are. As a person with Parkinson’s, I have a vested interest in wanting to see treatments to stop progression and improve quality of life for people living with Parkinson’s.”
She participated in the training in October 2010. Today, just five months into her new role as a Parkinson’s research advocate, she has already found several ways to impact data standardization for Parkinson’s. She says that the problem is that Parkinson’s researchers often collect and label data in different ways. For instance, one study will define its young onset PD participants as people younger than age 40, and another will say they should be defined as everyone under age 50. Down the road, there is no way to compare and share information across studies because the measurements are too different.
Ms. Dubman is also working to solve this problem through her service with the Coalition Against Major Diseases (CAMD)-Critical Path Institute, a nonprofit institute which brings together industry and government agencies to improve the development of new therapies by streamlining data. She has also reviewed new data standards created by the National Institute of Neurological Disorders and Stroke (NINDS) — a branch of the National Institutes of Health (NIH) that funds PD research — and provided her expert feedback on behalf of PDF and the Parkinson’s community.
Why is this work important? As Ms. Dubman puts it, “Data standards could speed up innovation, by allowing scientists to focus on the bigger picture rather than administrative details. We all want new treatments more quickly, and this is one way to improve the process.” As she uses her combination of professional expertise and personal dedication to the cause, so does she help increase the voice of people with Parkinson’s — exactly the aim of PAIR.
Would You Like to PAIR Up for Parkinson’s Research?
- If you are a person with PD who would like to learn more about becoming part of PAIR…
- If would like to speak with PDF about partnering with a research advocate at your institution, clinical study or support group…
- Then call us at (800) 457-6676; email us at email@example.com; or visit us at www.pdf.org/pair.
PDF’s Parkinson’s Advocates in Research (PAIR) program is a network of more than 100 research advocates from 36 states who work to bring educated consumer voices to important issues in Parkinson’s therapy development. This growing network is actively collaborating with scientists, government agencies and private industry to change the role that people with Parkinson’s play in the design and implementation of Parkinson’s research and programs.