Rare Diseases Registries Head

Job title: Rare Diseases Registries Head

Location: Morristown, NJ Cambridge, MA

About the Job

Join the team transforming care for people with immune challenges, rare diseases, cancers, and neurological conditions. In Specialty Care, you’ll help deliver breakthrough treatments that bring hope to patients with some of the highest unmet needs.

The Rare Diseases (RD) Registries Operations and Engagement Lead is a critical global role contributing to the continued development and growth of the Rare Diseases Registry at Sanofi. The individual will be responsible for program coordination/management and operational leadership of the Rare Disease Registries. This role offers an opportunity to work on the cutting-edge Rare Diseases Patient registries across multiple Lysosomal Storage Diseases  and contribute to the advancement of rare diseases patient research through real world data collection.  

The Rare Diseases (RD) Registries Operations and Engagement Lead reports to the Global Head for Medical Strategy, Planning and Innovation for Rare Diseases.  This role requires a GLOCAL mindset and an innovative approach to problem solving but also rooted in the tradition and legacy of patient centricity.  The Registries Operations and Engagement lead will also work closely with the individual TA Medical Heads and Medical Directors for Gaucher, Pompe and Fabry. This individual will also work in close collaboration with other members of the global, regional, affiliate, cross-functional, and alliance teams to enhance the growth of the RD franchise. 

About Sanofi:
We’re an R&D-driven, AI-powered biopharma company committed to improving people’s lives and delivering compelling growth. Our deep understanding of the immune system – and innovative pipeline – enables us to invent medicines and vaccines that treat and protect millions of people around the world. Together, we chase the miracles of science to improve people’s lives.

Main Responsibilities:
 

Key responsibilities include, but are not limited to:

• Developing an overall strategic and operational plan for RD Registries

• Overseeing all RD registry projects and ensure compliance with global guidelines.

• Leading a team of Rare Disease Registry Operations professionals including Site Operations, Data Management and Programming .

• Developing, maintaining, and monitoring registry programs including tracking of cross functional project milestones/timelines and contracts management

• Ensuring that key Registries programs, e.g. registry-based studies, digital initiatives (e.g. eConsent, ePRO, etc), and para-registry programs are implemented and delivered on time with optimal resource management.

• Proactively identifying and progressing key para-registry opportunities for collaboration, data analysis and dissemination that are aligned with Registries/Global medical strategies

• Preparing for potentially new or external registries/partnerships (e.g. public private partnerships)

• Maintaining overall registries budget

• Creating reports and dashboards on a regular basis for monthly, quarterly and annual distribution

• Serving as a primary contact for ad-hoc requests from various Business Unit functions and Regional teams for registry data and information

• Liaising with vendors/collaborators as needed for implementation of key projects

• Communicating internal and external value proposition of RD Registry

This position is based in Cambridge, Massachusetts.

About You

Performance Orientation Sets new and stretch goals for self or team, and achieves beyond what is expected; exploits opportunities to exceed goals

Team Leadership Actively engages the team to develop plans and resolve issues through collaborative problem solving, gains commitment 

Transversal Collaboration Builds informal networks internally and externally and views them as part of the value creation process

Strategic Awareness Articulates evolving priorities for the business within 3-5-year horizon. Incorporates sound understanding of marketing, sales, regulatory, payer, technology, and clinical practice as well as other relevant industries.

Change Leadership Sets clear roadmap in line with a larger change effort to focus people on accomplishing the change; engages others internally and externally by making the case for change and explaining their role

Organizational De