Key Dates

Related Announcements

Not Applicable.

Issued by

National Institute of Neurological Disorders and Stroke (NINDS)

Purpose

Purpose

The purpose of this time-sensitive Request for Information (RFI) is to solicit input from people living with Parkinson's and Parkinsonisms, families, caregivers, advocates, scientists, clinicians, healthcare providers, advocacy organizations, scientific or professional organizations, and the broader community to identify the most important gaps and opportunities in research, care and services. The scope of this RFI includes Parkinson's disease and all other neurodegenerative Parkinsonisms, such as multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson's-related dementia. This input will be used to develop the National Plan to End Parkinson's.

Background

On July 2, 2024, President Biden signed the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act into law. This law calls for the creation of an integrated national plan to prevent, diagnose, treat, and cure Parkinson's, ameliorate symptoms, and slow or stop progression.

The National Plan to End Parkinson's will be developed with input from the Advisory Council on Parkinson's Research, Care, and Services, which will include people living with Parkinson's, caregivers, health care providers, researchers, advocacy organizations, and representatives from federal agencies. The responses to this RFI will be shared with the Advisory Council to aid them in identifying priority actions and creating recommendations that will inform the National Plan to End Parkinson's.

More information about the National Plan to End Parkinson's and the Advisory Council on Parkinson's Research, Care, and Services can be found at National Plan to End Parkinson's | National Institute of Neurological Disorders and Stroke.

Information Requested

NIH is soliciting input from all interested stakeholders, including people living with Parkinson's and Parkinsonisms, families, caregivers, advocates, scientists, clinicians, healthcare providers, advocacy organizations, scientific or professional organizations and the broader community to identify .

Title/Name

Type of Organization/Affiliation

Responding on behalf of an organization (check box)

Name of Organization

Role in Organization

Please provide your perspective on any topics related to research on Parkinson's disease and related neurodegenerative parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, Parkinson's disease dementia, Lewy body dementia and dementia with Lewy bodies. We encourage you to indicate the level of priority if you provide feedback on multiple topics. Consider including information on the below topics or please highlight any additional research priorities for Parkinson's disease and related disorders. 

 

• Highest priority areas of research to understand the underlying factors contributing to Parkinson's disease and related disorders
• Ways to accelerate the development of safe and effective treatments to prevent, slow, or stop Parkinson's disease and related disorders, or ameliorate symptoms and improve quality of life.
• Research on the association between environmental triggers and Parkinson's disease and related disorders to help reduce exposure to potential triggers
• Ways to improve early diagnosis of Parkinson's disease and related disorders
• Disparities and interventions in communities disproportionately affected by Parkinson's disease or underrepresented in Parkinson's disease research
• Barriers and challenges to participating in the research process including trial participation

Please provide your perspective on any topics related to care and services for Parkinson's disease and related neurodegenerative parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, Parkinson's disease dementia, Lewy body dementia and dementia with Lewy bodies. We encourage you to indicate level of priority if you provide feedback on multiple topics. Consider including information on the below topics or please highlight additional care and service  priorities for Parkinson's disease and related disorders.

• Biggest challenges for people currently living with Parkinson's disease and related disorders and their caregivers and communities
• Gaps in clinical care and services for people living with Parkinson's disease and related disorders
• Current standards of clinical care or services that are particularly helpful and should be maintained for people living with Parkinson's and related disorders and/or their caregivers and communities
• Impact of Parkinson's disease and related disorders on the physical, mental, social, and financial health of individuals living with these diseases and their caregivers and communities   
• Ways to reduce the financial impact of Parkinson's disease and related disorders
• Challenges that are unique to people with young-onset Parkinson's disease and related disorders
• Disparities and interventions in Parkinson's disease presentation, outcomes, care, service delivery and access
• Ways to improve care and service delivery to populations disproportionately impacted by Parkinson's disease, such as minority populations
• Barriers and challenges to receiving care and services for Parkinson's disease and related disorders

How to Submit a Response

Responses to this RFI must be submitted via this form or submitted via email to the [email protected] inbox. If you email your response you must include "RFI" in the subject line.

Responses to this RFI are voluntary. Do not include any proprietary, classified, confidential, trade secret, or sensitive information in your response. The responses will be reviewed by NIH staff, shared with members of the Advisory Council, and individual feedback will not be provided to any responder. The U.S. Government will use the information submitted in response to this RFI at its discretion. This RFI is for information and planning purposes only and shall not be construed as a solicitation, grant, or cooperative agreement, or as an obligation on the part of the Federal Government, the NIH, or individual NIH Institutes and Centers to provide support for any ideas identified in response to it. The Government will not pay for the preparation of any information submitted or for the U.S. Government's use of such information. No basis for claims against the U.S. Government shall arise as a result of a response to this request for information or from the Government's use of such information. The provided information will be analyzed and may appear in summary form in reports or other publicly accessible resources. Personally identifying or sensitive information will not be included in public reports or resources.

Inquiries

Please direct all inquiries to:

National Institute of Neurological Disorders & Stroke (NINDS)
Email: [email protected]