Mission & Fundamental Commitments

The Mission of the Making Patients Heard Research Foundation is to improve clinical care and research. We will do so by empowering and enabling patients to characterize and convey their feelings and experiences, including what they say and do, about their illness, functioning, disease, health, and well-being. This directly reported knowledge will inform the clinical meaningfulness and value of care and treatments for a broad community of stakeholders ̶ Patients, Families, Clinicians, Researchers, Disease-Focused Organizations, Health Care Systems, Industry, Regulators, Insurers, and Government ̶ who will endorse our fundamental commitments

Fundamental Commitments

Listening to what patients say—in their own words—about how their illness affects them

Ensuring patients own the individual data that each submits, and protecting their privacy unwaveringly

Returning learnings—derived from their data—to patients, and placing those interpretations in the context of a collective data environment

What Problems Bother Patients with Parkinson’s Disease

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What Problems Bother Patients with Parkinson’s Disease

There have been few comprehensive surveys of the features of the illness bothering Parkinson’s disease (PD) patients, and none have assessed PD patient reports in their own words. 

The Making Patients Heard Research Foundation (MPH) has assembled a profile of what bothers PD patients using an extraordinary collection that includes more than 25,000 individuals who reported they had been diagnosed with PD. The data were obtained from the Fox Insight online research study https://foxinsight.michaeljfox.org and its associated shared database FoxDen https://www.michaeljfox.org/fox-den – both sponsored by the Michael J Fox Foundation for Parkinson’s Research. The data (source PD-PROP Feb 2020) were analyzed in collaboration with scientists at Grey Matter Technologies/Modality.ai, and an expert research team including PD clinical specialists, persons living with PD, data scientists, and statisticians.

Research participants included 23,164 English-speaking adults (55% men, 45% women) who were asked to report in their own words the problems that bother them due to their PD and how these problems affect their daily functioning. They could report up to five problems and order them starting with the most bothersome. Their online reporting by keyboard entry at study enrollment produced 51,198 verbatim narratives for the most bothersome problem. The verbatim reports were analyzed using natural language processing and human-in-the-loop curation to classify the verbatim text into 14 clinically meaningful domains or topics.

Eight domains were related to the movement disorder of PD (62% reports), and six domains were non-motor (38% reports) representing problems classified as psychological (mood and emotional disorders), pain, cognition, fatigue, sleep, and the autonomic nervous system controlling blood pressure, and gastrointestinal and urinary functions. Most problems in the motor domain were related to tremor, reduced dexterity, handwriting size, and impaired gait and balance.

Further analyses of this dataset will address the 65 individual symptoms that comprise the motor and non-motor domains, as well as the relationships of these symptoms to key factors such as age and duration of PD. The learnings from these analyses will be shared as MPH prepares to launch an innovative online research study designed to follow over time what bothers PD patients, and the impact of these problems on their daily functioning.  Additional research technologies will be employed to guide participants and record movement, voice, and other markers of PD. Please stay tuned to this MPH space.

Daniel Kinel JD, Secretary

Dan Kinel is a lawyer by training and profession. Since being diagnosed with Parkinson’s Disease in 2013, he has also become deeply involved both in patient advocacy and Parkinson’s Disease research.  Over the course of his almost three decades as a corporate and securities lawyer, he represented numerous companies, from start-ups to NYSE-listed public companies, in corporate governance, corporate finance, securities compliance and other business law matters.

 

Karl Kieburtz MD, Co-chair

Karl Kieburtz MD MPH is a neurologist and clinical researcher, and is currently Professor of Neurology, at the University of Rochester. He serves on the Steering Committee for the PPMI program sponsored by the Michael J Fox Foundation, and a Project Co-Director in the NINDS- funded Udall Center for Parkinson Disease at Rochester. He was elected as a Fellow in the American Association for the Advancement of Sciences in 2014. He co-founded Clintrex in 2008, providing scientific and regulatory advisory services to companies developing CNS therapies, and continues to serve as President. He serves on the scientific advisory boards of biotech and pharma companies, as well as for emerging data technology companies.

Ira Shoulson MD

Ira Shoulson, MD, trained in neurology, internal medicine, and experimental therapeutics, is currently professor of neurology at the University of Rochester and Georgetown University (adjunct), and chief medical officer at Modality.ai. 

In 2017, he founded Grey Matter Technologies, a company focused on interpreting what patients feel and experience in their own words using natural language processing and supervised machine learning. In June 2022, Grey Matter Technologies was acquired as a wholly owned subsidiary of Modality.ai where he now serves as chief medical officer.

Dr Shoulson’s passion for Making Patients Heard originated from his medical training at the University of Rochester and the National Institutes of Health (NIH), that in turn inspired his founding of the Parkinson Study Group (www.parkinson-strudy-group.org) and Huntington Study Group (www.huntington-study-group.org)  ̶̶  international academic consortia devoted to research and development of treatments for Parkinson and  Huntington diseases.  He has led more than 50 clinical research studies and played an instrumental role in the development of 10 new drugs for neurological disorders, including for Parkinson disease (selegiline, lazabemide, pramipexole, entacapone, clozapine, rasagiline, rotigitine), Huntington disease (tetrabenazine, dutetetrabenazine), and attention deficit disorder (Concerta). 

Dr. Shoulson is an elected member of the National Academy of Medicine of the National Academy of Sciences and was the recipient of the Michael J. Fox Foundation Pritzker Prize in recognition of his leadership in research and education for Parkinson disease. In September 2022, Dr Shoulson founded and now chairs the Making Patients Heard Research Foundation (MPH), a non-profit charitable organization with a mission to empower patients to be better narrators of their health, improve tools for online research and care, and develop clinicallymeaningful treatments.

Cindy Casaceli

Ms. Casaceli is a Research Associate Professor at the University of Rochester Center for Health + Technology. Ms. Casaceli holds an MBA from the Simon School of Business with concentrations in Computer Science and Accounting. Cindy’s undergraduate work was in Biochemistry with a concentration in Computer Science.

Over the past 25 years Ms. Casaceli has participated in the conduct of Neurologic research in Parkinsons Disease, Hunington’s Disease, Freidrich’s Ataxia and Alzheimers Disease. Ms. Casaceli has held positions including the Clinical Trials Coordination Center (CTCC) Director, CTCC Director of Data Management and the Interim Director of the Center for Health + Technology. She is a subject matter expert in the operational conduct of multicenter clinical trials and has 3 drug approvals.