We’re seeking a highly meticulous and collaborative Certified Tumor/Cancer Registrar to join the growing multidisciplinary care team at Cure 4 The Kids Foundation, Nevada’s premier childhood cancer and rare disease center.

This is an exceptional opportunity to bring your passion and expertise to the fight against childhood cancer and rare diseases while also enjoying an active lifestyle outside of work. 

We are seeking an experienced and dedicated Program Coordinator to establish and maintain the Childhood Cancer and Rare Disease Registry. This individual will be responsible for the development, implementation, and ongoing management of the registry, ensuring the collection of high-quality data and fostering collaborations with stakeholders. The ideal candidate will have a background in Tumor/Cancer Registry and possess strong leadership skills, a strong background in healthcare or research, and a passion for improving outcomes for children with cancer and rare diseases. 

Located in our state-of-the-art facility at 1 Breakthrough Way in the heart of beautiful Summerlin on the Roseman University of Health Sciences campus, Cure 4 The Kids Foundation (C4K) achieves the extraordinary with a model of success based on transformative innovation. We are one team with one vision and one mission centered around clinical excellence and compassionate care. As a 501(c)3 tax-exempt organization, we are committed to being a new kind of healthcare organization; one that blends the best of what corporate healthcare, education, and research have to offer with the generosity and spirit of charity. This hybrid model allows us to perform like a traditional healthcare facility in terms of best practices yet also allows us to create a uniquely family-centered patient experience. Our Charity Care Program ensures that those without medical insurance or who are unable to pay for services still receive the treatment they deserve. 

Cure 4 The Kids Foundation was selected in 2019, 2021, and 2022 (ranking #1 in our category) as one of the nation’s Best Nonprofit Organizations To Work For by The Best Companies Group in its annual nationwide survey, and was included in the Inc. 5000 list of fastest-growing companies in America in 2018. 

Childhood Cancer and Rare Disease Registry Program Description

The Childhood Cancer and Rare Disease Registry at Cure 4 The Kids Foundation will become a comprehensive and dynamic program dedicated to improving the understanding, diagnosis, treatment, and outcomes of childhood cancers and rare diseases. This registry aims to collect, analyze, and disseminate high-quality data to support research, enhance clinical care, and inform local and national policy and payer decisions.

Objectives

1. Data Collection: Gather detailed and standardized information on pediatric cancer and rare disease cases, including patient demographics, diagnosis, treatment protocols, and outcomes.
2. Research Support: Facilitate groundbreaking research by providing researchers with access to a robust and anonymized dataset, fostering new insights into disease mechanisms, treatment efficacy, and long-term health impacts.
3. Clinical Care Enhancement: Improve patient care by identifying best practices, treatment patterns, and potential areas for clinical intervention through data analysis.
4. Policy Development: Inform policymakers with evidence-based data to shape health policies, funding priorities, and resource allocation for pediatric cancers and rare diseases.
5. Patient and Family Support: Offer resources and support to patients and their families by connecting them with relevant clinical trials, treatment options, and community services.

Impact

The Childhood Cancer and Rare Disease Registry is poised to transform the landscape of pediatric oncology and rare disease research by providing invaluable data that drives innovation, enhances patient care, and supports informed decision-making. Through this registry, we aim to improve the lives of affected children and their families by advancing our understanding and treatment of these challenging conditions.

Key Responsibilities

• Program Development: Lead the design and launch of the Childhood Cancer and Rare Disease Registry at Cure 4 The Kids Foundation, including the creation of data collection protocols, database architecture, and standard operating procedures.
• Data Management: Oversee the collection, storage, and analysis of data, ensuring accuracy, consistency, and compliance with privacy regulations.
• Collaboration: Establish and maintain partnerships with Nevada’s state central registry, hospitals, clinics, research institutions, and advocacy groups to facilitate data sharing and collaborative research efforts.
• Research Support: Provide researchers with access to the registry data, assist in the development of research proposals, and support data analysis and interpretation.
• Quality Assurance: Implement and monitor quality control measures to maintain the integrity and reliability of the data collected.
• Reporting and Dissemination: Prepare regular reports on registry activities, findings, and impacts. Present data and insights to stakeholders, including healthcare providers, researchers, policymakers, and patient advocacy groups.
• Grant Writing and Fundraising: Identify funding opportunities, write grant proposals, and engage in fundraising activities to support the sustainability and growth of the registry.
• Team Leadership: Recruit, train, and manage a team of data analysts and support staff to ensure the efficient operation of the registry.
• Policy Development: Work with healthcare and regulatory authorities to develop policies and guidelines that promote the effective use of the registry data.

Qualifications

• Education: Bachelor’s degree in healthcare administration, public health, epidemiology, or a related field and/or Certified Tumor Registrar (CTR) preferred.
• Experience: Minimum of 3 years of experience in program management, data management, or research in a healthcare or clinical setting, with a focus on oncology or rare diseases.
• Skills:
  • Strong project management and organizational skills.
  • Excellent communication and interpersonal abilities.
  • Proficiency in data analysis software and database management.
  • Knowledge of healthcare data privacy regulations (e.g., HIPAA).
  • Experience in grant writing and fundraising.
  • Ability to lead and motivate a diverse team.
• Attributes:
  • Passion for improving healthcare outcomes for children.
  • Detail-oriented with a commitment to data accuracy and integrity.
  • Collaborative mindset with the ability to build strong relationships with stakeholder
• Location:
  • The preferred location will be onsite in Las Vegas, however, a hybrid position could be considered for the right candidate.