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NOT-CA-24-057 - Notice of Participation of the National Cancer Institute (NCI) in NOT-HL-24-014, Request for Information (RFI): Critical Challenges and Opportunities For Lymphatic Scientific, Clinical, and Disease Communities .

Issued by

National Heart, Lung, and Blood Institute (NHLBI)

National Cancer Institute (NCI) Participation Added May 23, 2024 (NOT-CA-24-057)

Purpose

The newly-established National Commission on Lymphatic Diseases (NCLD) (NCLD) aims to better understand and address the individual and collective burdens of lymphatic diseases. The NCLD invites public input on critical challenges and opportunities for the lymphatic scientific, clinical, and disease community, including strategies for fostering exploration of the patient and caregiver experience and perspectives from groups that support the care of the lymphatic disease community.  Public comments are also sought regarding scientific and clinical opportunities in lymphatic diseases including fundamental knowledge, implementation of practice guidelines, and addressing gaps and disparities.  

Background

It has been long understood that the lymphatic network plays a critical role in the human body's ability to fight infections and maintain fluid balance. Along with its well-established links to wide-ranging diseases, work in the last decade has identified additional functional roles of lymphatics across the spectrum of normal and pathological conditions including cancer, obesity and metabolism, cardiovascular and neurological diseases, and glaucoma. Furthermore, genes responsible for different forms of lymphatic diseases have been identified. Despite these important advancements, progress in the diagnosis, prevention, and treatment of lymphatic diseases lags, creating a suboptimal patient experience. In December 2023, the National Institutes of Health (NIH) launched the National Commission on Lymphatic Diseases (NCLD) with the goals of improving the quality of life for people living with lymphatic diseases; identifying, and diagnosing additional related conditions caused by lymphatic malfunction; and advancing overall efforts on lymphatic disease research. Driven by a request from the lymphatic community and with the support of Institutes across the NIH, the National Heart, Lung, and Blood Institute (NHLBI) led a direct response to a congressional directive to establish a national body to advance lymphatic research.

The charge of the NCLD is to provide transparent, inclusive, and accessible public engagement that will identify critical challenges, provide scientific and clinical opportunities, and address the individual and collective burdens of lymphatic disease. This RFI is part of a set of activities supporting the work of the Commission.

Information Requested

NCLD seeks input from a wide range of interested parties within and beyond the lymphatics community, including, but not limited to, patients, caregivers, federal agencies, third-party payers, researchers, healthcare professionals, advocacy groups, and industry experts. The insights gained from this RFI will help to:

1. Identify the most significant gaps in current research on lymphatics in health and disease.
2. Understand the barriers encountered by researchers, clinicians, and patients (e.g., lack of awareness, funding, or insufficient resources and diagnostic and technological tools).
3. Identify approaches and challenges to explore opportunities for collaboration, innovation and making effective advances in affordable and accessible diagnosis, treatment, and prevention of lymphatic diseases resulting from lymphatic dysfunction.

Input sought includes, but is not limited to, the following topic areas:

• Community Inclusion: Suggestions on which groups and organizations within the lymphatic community to include in outreach efforts
• Educational Imperatives: Identification of types and objectives of information needed to support and promote educational needs as well as how or where educational resources might be accessed
• Patient Utilization Aids/Tools: The ways different types of tools could be utilized by patients to address their health or functional needs and how these might be accessed
• Scientific Advancement: Identification of gaps or opportunities that currently exist in the science/research realm that would foster development of diagnostics and therapies; what disciplines ought to be bridged in order to advance understanding of lymphatic diseases, including detection, prevention, and/or treatment; concerns regarding access and coverage for current treatments recognized to be effective 

How to Respond

Comments must be submitted electronically on the submission website: https://rfi.grants.nih.gov/?s=663a43f2f5e57a5a12021e82. Responses will be accepted through 11:59:59 pm (ET) on Friday, June 28, 2024.

Responses to this RFI are voluntary. Respondents are advised that the Government is under no obligation to acknowledge receipt of the information shared or provide feedback to respondents with respect to any information submitted. No proprietary, classified, confidential, or sensitive information should be included in your response. This RFI is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the Federal Government in general, the NIH, or the NHLBI or NCLD specifically.

Other than your name and contact information, the Government reserves the right to use any submitted information on public websites, in reports, in summaries of the state of the science, in any possible resultant solicitation(s), grant(s), or cooperative agreement(s), or in the development of future funding opportunity announcements. Please note that the Government will not pay for the preparation of any information submitted or for use of that information.

We appreciate your input and invite you to share this RFI opportunity with your colleagues and others in your community.

Inquiries

Please direct all inquiries to:

Selen Catania, Ph.D.
National Heart, Lung, and Blood Institute (NHLBI)
Division of Cardiovascular Sciences
Telephone: 301-480-8353
Email: [email protected]