The Patient Report of Problems™
(PROP™)

The Patient Report of Problems (PROP) is an open-ended patient-reported outcome where patients are asked to describe their most bothersome problems in their own words. These descriptions (called “verbatims”) are analyzed by natural language processing (NLP) technology to extract information about specific symptoms, their severity and priority, and what makes them better or worse.  Further details: 

• https://modality.ai/about/the-prop 

• https://www.michaeljfox.org/grant/parkinsons-disease-patient-report-problems-pd-prop-curation 

Featured Publication – PROP Scientific Methodology

PARKINSON'S DISEASE  |  Journal of Parkinson's Disease 2023

What Patients Say: Large-scale Analyses of Replies to the Parkinson’s Disease Patient Report of Problems (PD-PROP)

C. Marras, L. Arbatti, A. Hosamath, A. Amara, K. E. Anderson, L. M. Chahine, S. Eberly, D. Kinel, S. Mantri, S. Mathur, D. Oakes, J. L. Purks, D. G. Standaert, C. M. Tanner, D. Weintraub, I. Shoulson

Featured Publication – PROP Technology Methodology

MODALITY PLATFORM / PARKINSON'S DISEASE  |  arXiv 2023 

What Do Patients Say About Their Disease Symptoms? Deep Multilabel Text Classification With Human-in-the-Loop Curation for Automatic Labeling of Patient Self Reports of Problems. 

L. Arbatti, A. Hosamath, V. Ramanarayanan, and I. Shoulson 

HUNTINGTON'S DISEASE  |  Journal of Huntington’s Disease 2024

What Huntington’s Disease Patients Say About Their Illness: An Online Direct-to-Participant Pilot Study

K. Anderson, L. Arbatti, A.Hosamath, A. Feigin, J. Goldstein, E. Kayson, B. Kinsler, L. Falanga, L. Denise, N. Carlozzi, S. Frank , K. Jackson, S. Kostyk, J. Purks, K. Serbin, S Kinel,

C. Beck, I. Shoulson

PARKINSON'S DISEASE  |  Neurology Clinical Practice 2024

Cognitive Symptoms in Cross-Sectional Parkinson Disease Cohort Evaluated by Human-in-the-Loop Machine Learning and Natural Language Processing

J. L. Purks, L. Arbatti, A. Hosamath, A. W. Amara, K. E. Anderson, L. Chahine, S. W. Eberly, D. Kinel, S. Mantri, S. Mathur, D. Oakes, D. G. Standaert, D. Weintraub, I. Shoulson and C. Marras

PARKINSON'S DISEASE  |  Journal of Parkinson's Disease 2024

In Their Own Words: Fears Expressed by People with Parkinson’s Disease in an Online Symptom Database

S. Mantri, J. L. Purks, D. Kinel, L. Arbatti, A. Hosamath, A. Allen, A. Amara, K. Anderson, L. Chahine, S. Eberly, S. Mathur, D. Standaert, D. Oakes, D. Weintraub, I. Shoulson and C. Marras

PARKINSON'S DISEASE  |  Movement Disorders 2024

Association between Subjective Cognitive Complaints and Incident Functional Impairment in Parkinson's Disease

D. Weintraub, C. Marras, A. Amara, K. E. Anderson, L. M. Chahine, S. Eberly, A. Hosamath, D. Kinel, S. Mantri, S. Mathur, D. Oakes, J. L. Purks, D. G. Standaert, I. Shoulson, and L. Arbatti

HUNTINGTON'S DISEASE  |  148th Annual Meeting of the American Neurological Association (ANA) 2023

Online Self Report Of Problems And Functional Consequences In Huntington Disease: Feasibility And Informativeness

K. E. Anderson, L. Arbatti, A. Hosamath, A. Feigin, J. Goldstein, E. Kayson, S. Kinel, C. Beck and I. Shoulson 

HUNTINGTON DISEASE  |   The 30th Annual Meeting of the Huntington Study Group  2023

What People Diagnosed with Huntington Disease Say In Their Own Words About What Bothers Them

K. E. Anderson, L. Arbatti, A. Hosamath, L. Falanga, A. Feigin, J. Goldstein, E. Kayson, N. Carlozzi, S. Frank, K. Jackson, B. L. Kinsler, S. Kostyk, J. L. Purks, K. P. Serbin, S. Kinel, C. A. Beck and I.Shoulson 

PARKINSON'S DISEASE  |  Clinical Parkinsonism and Related Disorders 2023

Internal Tremor in People with Parkinson’s Disease: Demographic Characteristics and Comorbid Symptoms

L. Chahine, L. Arbatti, A. Hosamath, A. Amara, K. E. Anderson, J. Purks, S. Eberly, D. Kinel, S. Mantri, S. Mathur, D. Oakes, D. G. Standaert, D. Weintraub, I. Shoulson, C. Marras

PARKINSON'S DISEASE  |  International Congress of Parkinson’s Disease and Movement Disorders (MDS) 2023

PD-PROP Reporting in Participants' Own Words Shows High Burden of Cognitive Symptoms in Early Parkinson's Disease

J. Purks, L. Arbatti, A. Hosamath, A. Amara, K. E. Anderson, L. M. Chahine, S. Eberly, D. Kinel, S. Mantri, S. Mathur, D. Oakes, D. G. Standaert, D. Weintraub, I. Shoulson and C. Marras 

PARKINSON'S DISEASE  | 147th Meeting of the American Neurological Association (ANA) 2022

Human-in-the-Loop Machine Learning Curation of Problems That Bother Parkinson Disease Patients

C. Marras, L. Arbatti, A. Amara, K. Anderson, C. Bale, L. Chahine, S. Eberly, A. Hosamath, D. Kinel, S. Mantri, S. Mathur, D. Oakes, J. Purks, D. Weintraub and I. Shoulson

PARKINSON'S DISEASE  |  Journal of Parkinson’s Disease (JPD) 2022

Longitudinal Cohort Study of Verbatim-Reported Postural Instability Symptoms as Outcomes for Online Parkinson’s Disease Trials

I. Shoulson, L. Arbatti, A. Hosamath, S.W. Eberly, D. Oakes

PARKINSON'S DISEASE  |  Journal of Parkinson’s Disease (JPD) 2021

Predictive Value of Verbatim Parkinson’s Disease Patient-Reported Symptoms of Postural Instability and Falling

 M. Javidnia, L. Arbatti, A. Hosamath, S.W. Eberly, D. Oakes, I. Shoulson

PARKINSON'S DISEASE  |  American Academy of Neurology (AAN) 2021

Cross-Sectional Profile of Most Bothersome Problems as Reported Directly by Individuals with Parkinson’s Disease

L. Vinikoor-Imler, L. Arbatti, A. Hosamath, I. Sapir, J. Shirvan, N. Maserejian, I. Shoulson

PARKINSON'S DISEASE / HUNTINGTON DISEASE  |  Huntington Study Group (HSG) 2021

Topic Modeling of Verbatim Patient Problem Reports Shows Differing Priorities of Family Impact for Huntington Disease and Motor Symptoms for Parkinson Disease

J.L. Purks, K.E. Anderson, L. Arbatti, A. Hosamath, I. Shoulson

PARKINSON'S DISEASE  |  American Neurological Association (ANA) 2021

Online Patient Reporting of Postural Instability Symptoms as Outcomes for Parkinson Disease Clinical Trials

I. Shoulson, L. Arbatti, A. Hosamath, S. Eberly, D. Oakes

PARKINSON'S DISEASE  |  Movement Disorders Society (MDS) 2020

Comparison of Categorical- and Verbatim-Reported Postural Instability Symptoms Among Fox Insight Parkinson Research Participants

M. Javidnia, L. Arbatti, A. Hosamath, S. Eberly, D. Oakes, A. Nguyen, I. Shoulson

PARKINSON'S DISEASE  |  American Society for Experimental Neurotherapeutics (ASENT) 2020

Informing Natural History and Clinical Trials from Verbatim Reports of >20,000 Parkinson Patients

L. Arbatti, C. Marras, D. Standaert, C.M. Tanner, L. Smolensky, C. Kopil, J. Hamilton, E. Flagg, M. Javidnia, C.A. Christopher, A. Hosamath, A. Nguyen, I. Shoulson

PARKINSON'S DISEASE  |  American Neurological Association (ANA) 2020

Parkinson Disease Symptoms and the Company They Keep as Reported Directly by >25,000 Patients

I. Shoulson, L. Arbatti, A. Hosamath, M. Javidnia, D. Oakes, S. Eberly, C. Marras, D. Standaert, C.M. Tanner, J. Hamilton, L. Smolensky, C. Kopil, C.A. Christopher, A. Nguyen

PARKINSON'S DISEASE  |  American Medical Informatics Association (AMIA) 2019

Evaluation of Automatic Speech Recognition Application Programming Interfaces (APIs) of Verbatim Reports from Parkinson Disease (PD) Patients

R. Chadaram, L. Arbatti, A. Nguyen, I. Shoulson

PARKINSON'S DISEASE  |  American Medical Informatics Association (AMIA) 2019

Natural Language Processing as Applied to Patient Verbatim Reports

L. Arbatti, A. Nguyen, I. Shoulson

PARKINSON'S DISEASE  |  World Parkinson Congress Journal of Parkinson’s Disease (JPD) 2019

A Cross-Sectional Natural History of Parkinson Disease as Reported by >10,000 Patients

I. Shoulson, L. Arbatti, C. Marras, D. Standaert, C.M. Tanner, L. Smolensky, C. Kopil, J. Hamilton, E. Flagg, C.A. Christopher, A. Nguyen

PARKINSON'S DISEASE  |  Movement Disorders Society (MDS) 2019

What Bothers Parkinson Disease Patients? Verbatim Reports from >10,000 Patients Informing Natural History and Clinical Trials

I. Shoulson, L. Arbatti, C. Marras, D. Standaert, C. Tanner, L. Smolensky, C. Kopil, J. Hamilton, E. Flagg, C.A. Christopher, A. Nguyen

PARKINSON'S DISEASE  |  International Society for Clinical Trials and Methodology (ISCTM) 2019

Verbatim Reports of Problems from >10,000 Parkinson Disease Patients: Informing Natural History and Clinical Outcome Assessments

I. Shoulson, L. Arbatti, C. Marras, D. Standaert, C.M. Tanner, L. Smolensky, C. Kopil, J. Hamilton, E. Flagg, C.A. Christopher, A. Nguyen

PARKINSON'S DISEASE  |  American Academy of Neurology (AAN) 2019

What Bothers Parkinson Patients: Clinical Curation of their Verbatim Reports

L. Arbatti, C. Marras, C. Tanner, D. Standaert, A. Nguyen, I. Shoulson

PARKINSON'S DISEASE / HUNTINGTON DISEASE  |  Huntington Study Group (HSG) 2018

Problems that Bother Parkinson Disease Patients: Framework for a Patient Reported Natural History of Parkinson and Huntington Diseases

I. Shoulson, L. Arbatti, A. Nguyen, D. Standaert, C. Marras, C.M. Tanner

PARKINSON'S DISEASE  |  American Neurological Association (ANA) 2018

Problems that Bother Parkinson Patients: The Basis for a Patient-Reported Natural History

L. Arbatti, C. Marras, D. Standaert, C.M. Tanner, A. Nguyen, I. Shoulson

PARKINSON'S DISEASE  |  Movement Disorders Society (MDS) 2018

Framework for a Patient-Reported Natural History of Parkinson Disease

L. Arbatti, A. Nguyen, C. Marras, D. Standaert, C.M. Tanner, L. Smolensky, C. Kopil, L. McLaughlin, E. Flagg, C.A. Christopher

PARKINSON'S DISEASE  |  American Academy of Neurology (AAN) 2018

Foundations for a Patient-Reported Natural History of Parkinson Disease: Cross-sectional Analysis of Motor and Non-Motor Symptoms of the Fox Insight PD-PROP Dataset

L. Arbatti, A. Nguyen, L. McLaughlin, L. Smolensky, C. Kopil, E. Flagg, C.A. Christopher, I. Shoulson

PARKINSON'S DISEASE  |  International Society for Clinical Trials and Methodology (ISCTM) 2018

Foundations for a Patient-Reported Natural History of Parkinson Disease: Cross-sectional Analysis of Cardinal Signs of the MJFF Fox Insight PD-PROP Dataset

L. Arbatti, A. Nguyen, L. McLaughlin, L. Smolensky, C. Kopil, E. Flagg, C.A. Christopher, I. Shoulson

PARKINSON'S DISEASE  |  Parkinson’s Disease Therapeutics Conference (PDTC) 2017

Foundations for a Patient-Reported Natural History of Parkinson Disease: Cross-sectional Analysis of the MJFF Fox Insight Platform

L. Arbatti, A. Nguyen, L. McLaughlin, L. Smolensky, C. Kopil, E. Flagg, C.A. Christopher, I. Shoulson