Job Title: Vice President of Research Programs  

Category: Full-time, Exempt 

Reports to: President and CEO 

Location: Remote (HQ in Kansas City, MO) 

About PKD 

The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded $50 million in PKD research and leveraged $1.5 billion in government funding while serving our local communities across the country. We are inspired by our mission and driven by our vision. Our vision is to #endPKD.   

Position Summary: 

The Vice President of Research Programs will play a pivotal leadership role, shaping the strategy, execution, and reporting of our mission programs to drive impact on a national scale. This senior leader will be instrumental in enhancing and expanding our research program offerings, which funds researchers and clinician scientists across the world who are dedicated to finding answers to help us better understand polycystic kidney disease. They will ensure these programs align with the organization’s mission, work collaboratively with the Advancement team to secure funding, and lead with empathy, equity, and innovation to guarantee exceptional long-term patient-centered outcomes. The VP will also manage and mentor a small team, fostering a collaborative environment that promotes professional growth and high performance. The VP of Research Programs will be a dynamic leader, adept at forging partnerships, driving strategic initiatives, and fostering a culture of excellence across the organization. 

Duties and Responsibilities: 

• Oversee the planning, execution, and completion of all research projects, ensuring they are conducted on time, within budget, and to the highest standards. 

• Direct the development, implementation, evaluation, promotion, and sustainability of the PKDF’s research programs. 

• Cultivate strategic partnerships with pharmaceutical companies, biotechnology firms, and medical device manufacturers to accelerate the development and availability of novel therapies for PKD. 

• Collaborate on research initiatives, clinical trials, and patient-centered outcomes studies aimed at advancing PKD treatment options. 

• Responsible for annual Grant Review and SAP meeting in partnership with program chairs, advisory groups, and internal collaborators. 

• Lead the development and dissemination of research findings through data posters and papers, collaborating with internal and external stakeholders to ensure high-quality, impactful publications. 

• Ensure a robust and sustainable ADPKD Patient Registry by developing a comprehensive roadmap, evaluating partner performance, redefining enrollment targets, and enhancing patient experience. 

• Oversee the implementation of new developments and ensure rigorous user acceptance testing and feedback integration. 

• Maintain a relationship with the IRB to ensure the Registry complies with the protocol, updating when necessary.  

• Responsible for the selection, management, and collaboration of all vendor relationships associated with the ADPKD Registry.  

• Ensure the integrity and quality of data collected through research initiatives, promoting rigorous data management and analysis practices. 

• Other duties as assigned. 

Ideal Qualifications: 

• PhD or Master’s degree from an accredited college or university, preferably in public health, or other health and human services related field. 

• Seven plus years’ progressive leadership experience in program management, preferably within the nonprofit, health, or scientific research sectors. 

• Proficient in data analysis and the use of impact metrics to drive program improvements, patient outcomes, and make informed decisions. 

• Experience managing budgets and collaborating with fundraising teams to ensure the sustainability and growth of program initiatives. 

• Proven ability to lead diverse teams and drive strategic goals with a balance of empathy and accountability. 

• A strategic thinker with a track record of driving innovation and solving complex challenges related to program implementation and impact. 

• Familiar with Good Clinical Practice guidelines. 

• Demonstrated familiarity with patient-centered research. 

• Experience with Proposal Central is preferred but not required.  

• Committed to acquiring in-depth knowledge of the basics of ADPKD and ARPKD. 

• Excellent interpersonal and relationship-building skills  

• Ability to work collaboratively with internal and external stakeholders, including staff, volunteers, and vendor partners; high degree of professionalism.     

• Strong customer service skills and the ability to problem solve.  

• Excellent communication skills, both verbally and in writing.  

• Strong organizational and project management skills; proficiency in managing multiple projects simultaneously.  

• Proven ability to work independently in a remote environment, managing multiple priorities and deadlines while also serving as a manager to a multi-person team.  

• Familiarity with remote office settings, including video communications (Zoom) and virtual meetings.  

 Physical Demands: 

• Must be able to sit or stand for extended periods of time. 

• Use hands and arms, read, stoop, crouch, talk, hear, and see objects clearly at 20 inches or less. 

• Lift and move items weighing up to 20 lbs. 

The physical demands described here are representative of those that must be met by an employee to successfully perform the essential functions of this job. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions. 

Work Location and Travel Requirements: 

• Position is remote, home-based, available in any U.S. state.  

• Employees must have dedicated workspace free from distractions. 

• The workspace should be large enough to work efficiently and have reliable internet and phone connectivity 

• Employees residing outside of the Kansas City Metro must live within reasonable proximity to a major airport hub for required travel.  

• Travel to several professional conferences annually.  

• Occasional business travel will be required to the PKD Foundation office in Kansas City, Missouri. 

Benefits*: 

 
We value our employees’ time and efforts. Our commitment to your success is enhanced by our competitive compensation (commensurate with experience), in addition to a benefits package including:  

• Employer paid medical benefits including healthcare, dental, and vision for individual.  

• Employer funded HSA (for those who elect an HDHP)  

• Life insurance and disability insurance  

• 401(k) retirement savings plan with 12% employer contribution, no match required, after six months of continuous service  

• 11+ paid Holidays and 20 PTO days per year  

• Paid Half-day Fridays between Memorial Day and Labor Day 

• Remote work environment, with collaborative business center available to employees local to the Kansas City metro area as needed.   

*Benefits are subject to board review annually and may change.  

As required by applicable Pay Transparency laws, PKDF provides a range of minimum compensation for roles that may be hired in locations under these requirements. Multiple