One of PC Project’s high-priority strategic goals was developing and disseminating a PC Research Agenda (RA). The RA was a major project that took hours of dedication and input from key thought leaders in our field. Dr. Helaine Resnick, a friend of board members from the Klein/Feinstein family, directed the planning and coordinated the efforts with Drs. Eli Sprecher and Edel O’Toole serving as the project co-chairs. We are so grateful to Dr. Resnick and the monumental efforts of our key PC scientific and thought leaders for their work and dedication to this important document which will guide future PC research and funding.
The PC Research Agenda was published by the Journal of Investigative Dermatology December 2023. Click here for a pdf copy of the PC Research Agenda.
You can also view the article on the JID website by clicking here.
Background
Definition of a Research Agenda
A research agenda articulates a set of research questions or objectives that have been identified as high priority in a specific field of study. For organizations that focus on specific diseases, research agendas often include a heterogeneous group of topics that cover a wide variety of issues.
These topics may include:
- The genetic basis of disease
- Identifying signaling abnormalities that may offer promise for drug development
- Identification and validation of biomarkers that inform on diagnosis and/or disease progression
- Improved understanding of disease phenotypes and the implication of these phenotypes for treatment
- Research on care planning, care coordination, continuity of care, and optimizing patient engagement in their own care
- Identifying how technology can be harnessed to enhance patient education and outcomes
- Determining how to maximize physical activity and other favorable behaviors in the PC setting
- Understanding and addressing mental health outcomes for PC patients and their families
The heterogeneity of research areas that are highlighted in a RA should reflect the breadth of issues that impact patients and the clinicians who care for them. Topics included a mix of high-priority objectives that can be reasonably met in a 5-year time frame as well as goals that may require a longer time horizon to achieve.
Rationale for Developing and Disseminating a PC RA
Some of the reasons why it is important for PC Project to develop and disseminate a PC RA. Some of these reasons include:
- A PC RA will provide an unambiguous, unified voice to articulate PC research topics that need immediate attention.
- A PC RA will prioritize research topics across many professional disciplines, thereby facilitating the ability of researchers with diverse backgrounds and expertise to contribute to coordinated, forward movement in PC research and patient care.
- A PC RA can provide a platform for patients, families, and other stakeholders to actively define priorities that impact their lives.
- A widely disseminated PC RA will enhance the visibility of PC and the investigators who engage in PC research.
- A PC RA will help promote collaboration among PC investigators.
- A PC RA will facilitate communicating research priorities to policymakers and research sponsors.
- A PC RA can be used by researchers in funding applications to provide a rationale for their proposed work.
- A PC RA offers an objective metric to assess progress in PC Research over time.
To ensure the writers are aligned with patients when it comes to research priorities, PC Project surveyed the community to ask which physical and social/emotional areas were of most importance to focus on. While some answers may seem obvious (pain is the number one physical problem), the survey responses will ensure the research agenda reflects the voices of PC patients and the overall PC community.
PC Project will use the RA to increase interest in stakeholders, such as rare disease biotechnology companies, scientists, pharmaceutical companies and government bodies and leverage support from funders such as the NIH. The Research Agenda will also be used to direct priority areas of research which may be funded in future pilot grant calls by PC Project.
