Real World Evidence Lead, HIDO, Global Rare Diseases

About Us

Chiesi is an international research-focused biopharmaceutical group with 90 years' experience, operating in more than 30 countries, with its Headquarters in Parma, Italy. More than 8,000 employees across the group are united by a singular purpose: promoting a healthier world for our people, patients, and the planet. This is what drives us as we research, develop, and market innovative drugs across our main therapeutic areas.

Discover more here. At Chiesi we are thinking generations ahead, driving sustainable innovation with purpose. This fosters a culture of reliability, transparency, and ethical behavior at every level. As a Benefit Corporation and a certified B Corp, we have embedded sustainability in our bylaws and continuously measure our impact. Diversity and inclusion are at the heart of who we are. We believe our differences make us stronger. We are a vibrant ecosystem of passionate, talented individuals united by strong values, each bringing unique perspectives that help us to continuously challenge the status quo for the better.

Chiesi Global Rare Diseases

Chiesi Global Rare Diseases is a Chiesi Group's business unit established in February 2020 and focused on research, development, and commercialization of treatments and patient support services for rare and ultra-rare disorders, many of whom have limited or no treatments available. This unit is based in Boston, Massachusetts, with a strong synergy with the headquarters in Parma. Rare unit has a focus on research and product development for lysosomal storage diseases, rare hematology, ophthalmology disorders and rare immunodeficiencies. The unit is also a dedicated partner with global leaders in scientific research, patient advocacy and care.

Discover more here.

What We Are Looking For

This is what you will do

• Reporting to: Sr. Director, RWE, Global Rare Diseases
• Responsibilities:
• Leading and executing the global RWE strategy and vision for the Hematology, Immunology, Dermatology and Ophthalmology (HIDO) Portfolio within GRD, ensuring the strategy, creation and updating of the integrated evidence generation plan (IEGP), in alignment with cross-functional partners to meet research and commercial objectives.
• Driving enterprise-level RWE impact, including building strategic data partnerships, advancing innovative methodologies, and influencing cross-functional decision-making.
• Acting as the strategic RWE leader across development, regulatory, and commercialization phases, and ensuring its integration into regulatory, payer, and clinical decision-making across the HIDO Portfolio including Ferriprox® (deferiprone) in Iron overload (e.g., beta-thalassemia, SCD), Filsuvez® (birch triterpenes) Epidermolysis bullosa, Raxone® (idebenone) Leber’s Hereditary Optic Neuropathy and future pipeline or acquired assets.
• Increasing the integration of RWD sources to enhance evidence-based decision making through research programs, while providing medical leadership as appropriate on cross-functional teams supporting local and global needs in a prioritized manner.
• Publishing, where appropriate, in high impact journals.
• Capability Building & Organizational Leadership:
• Continuously improving RWE capabilities, processes, and infrastructure to support global and local evidence generation for HIDO.
• Building and scaling RWE capabilities as a competitive advantage for GRD.
• Establishing best practices, standards, and ways of working across regions.
• Leading change management to embed RWE into core organizational processes.
• External Data & Partnership Strategy:
• Lead identification, evaluation, and execution of external RWD partnerships and data acquisition strategies.
• Oversee due diligence, contracting support, and governance of external data sources and collaborations.
• Build long-term strategic relationships with academic institutions, data vendors, consortia, and healthcare systems.
• Scientific & Technical Leadership:
• Fostering the appropriate use and adoption of appropriate analytic technologies to improve RWE reliability and applicability to provide insights that matter to internal and external stakeholders.
• Providing senior scientific leadership and deep technical expertise in observational research, epidemiology, and RWE methodologies.
• Guiding study design, analytics strategy, and interpretation of evidence.
• Ensuring adoption of innovative approaches, including AI/ML and advanced analytics, in RWE generation.
• Cross-Functional Influence & Integration:
• Acting as the RWE subject matter expert within cross-functional teams (Medical, Clinical Development, Market Access, Regulatory).
• Influencing asset strategies, development plans, and access strategies.
• Leading alignment of RWE priorities across global and regional stakeholders.
• Evidence Generation Oversight:
• Providing executive oversight of RWE studies, registries, and non-interventional programs, ensuring studies are aligned to strategic priorities and deliver high-impact outcomes.
• Maintaining governance of study concept development and prioritization.
• External Scientific Leadership & Visibility:
• Representing Chiesi externally in scientific forums, consortia, and partnerships.
• Driving publication strategy and dissemination of RWE insights.
• Maintaining awareness of emerging trends, regulatory guidance, and methodological advances.
• Leadership & Matrix Management:
• Leading cross-functional and multidisciplinary teams in a matrix environment.
• Overseeing budgets, timelines, and resource allocation across RWE initiatives.
• Mentoring junior team members and as needed, directing reports over time.