Real World Evidence Lead, HIDO, Global Rare Diseases (United States, US)

About us

Chiesi is an international research-focused biopharmaceutical group with 90 years’ experience, operating in more than 30 countries, with its Headquarter 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 behaviour 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 the Sr. Director, RWE, Global Rare Diseases, the Real World Evidence Lead HIDO is responsible for 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. This role drives enterprise-level RWE impact, including building strategic data partnerships, advancing innovative methodologies, and influencing cross-functional decision-making.

You will be responsible for

RWE Strategy & Leadership

Act as a change agent, effectively communicating the value of RWE and influencing adoption of new processes and approaches.  This includes:

Lead the global RWE strategy for the HIDO GRD portfolio, 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.

Increase 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.

Publish, where appropriate in high impact journals.

 Capability Building & Organizational Leadership

Continuously improve RWE capabilities, processes, and infrastructure to support global and local evidence generation for HIDO Build and scale RWE capabilities as a competitive advantage for GRD

Establish best practices, standards, and ways of working across regions

Lead 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

Foster 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

Provide senior scientific leadership and deep technical expertise in observational research, epidemiology, and RWE methodologies

Guide study design, analytics strategy, and interpretation of evidence

Ensure adoption of innovative approaches, including AI/ML and advanced analytics, in RWE generation 

Cross-Functional Influence & Integration

Act as the RWE subject matter expert within cross-functional teams (Medical, Clinical Development, Market Access, Regulatory)

Influence asset strategies, development plans, and access strategies

Lead alignment of RWE priorities across global and regional stakeholders

Evidence Generation Oversight

Provide executive oversight of RWE studies, registries, and non-interventional programs, ensure studies are aligned to strategic priorities and deliver high-impact outcomes

Maintain governance of study concept development and prioritization

External Scientific Leadership & Visibility

Represent Chiesi externally in scientific forums, consortia, and partnerships

Drive publication strategy and dissemination of RWE insights

Maintain awareness of emerging trends, regulatory guidance, and methodological advances

Leadership & Matrix Management

Lead cross-functional and multidisciplinary teams in a matrix environment

Oversee budgets, timelines, and resource allocation across RWE initiatives

Manage consultants, mentor junior team members and as needed, direct reports over time

You will need to have

Advanced degree (PhD, DrPH, MD, PharmD, MSc) in epidemiology, public health, health economics, or related field

8+ years of experience in RWE, HEOR, epidemiology, or observational research in pharma/biotech or related setting

Demonstrated success in leading RWE strategy at asset or portfolio level

Strong experience in real-world data sources (claims, EHR, registries, etc.)

Proven track record of building partnerships and influencing senior stakeholders

Experience supporting regulatory and/or market access use of RWE

Key Competencies

Deep expertise in epidemiology and RWE methodologies

Ability to translate evidence into business and clinical impact

Demonstrated ability to influence senior stakeholders and cross-functional leadership

Strong executive communication skills

Experience with advanced analytics, AI/ML, and innovative RWE approaches

Ability to shape data strategy and infrastructure decisions

Strong governance and oversight of complex, multi-country studies and programs

Ability to manage competing priorities and large-scale initiatives

We would prefer for you to have

Rare disease experience strongly preferred

Location

The role is based in the US, with an estimated 20% travel requirement, including international travel

What we offer

No matter where your path starts at Chiesi, it leads to inspiring possibilities. Your future is our focus, and we are committed to nurturing your development in our dynamic, friendly environment with access to resources and training every step of the way.

We provide top-class benefits, including comprehensive healthcare programs, work-life balance initiatives, and robust relocation support. Our salary package is competitive, comprising a basic salary, performance bonuses, and benefits benchmarked against the external market. Additionally, we offer flexible working arrangements, remote work options, and tax assistance services for foreign colleagues, all designed to help you thrive.

Chiesi is an equal opportunity employer committed to hiring a diverse workforce at all levels of our business. All qualified applicants receive consideration for employment based on attitude and merit, without regard to race, national origin, age, sex, religion, disability, sexual orientation, marital status, military status, gender identity or expression, or any other basis protected by applicable laws. This policy applies to all aspects of employment, including hiring, transfer, promotion, compensation, eligibility for benefits, and termination.

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