Pediatric Rare Diseases Development in the Pharmaceutical Industry: An International Consortium for Innovation and Quality in Pharmaceutical Development, Clinical Pharmacology Leadership Group‐Pediatrics Working Group, Rare Diseases Subteam Whitepaper Examining the Current Landscape and Recommendations for the Future

Author:

Krishna Rajesh1ORCID,Sebastien Bernard2,Corriol‐Rohou Solange3ORCID,Cheung S. Y. Amy4ORCID,Liu Jing5ORCID,Suryawanshi Satyendra6

Affiliation:

1. Certara Drug Development Solutions Certara USA, Inc. Princeton New Jersey USA

2. Sanofi, R&D Gentilly France

3. AstraZeneca, R&D Paris France

4. Integrated Drug Development, Certara London UK

5. Pfizer Inc. Groton Connecticut USA

6. Bristol‐Myers Squibb Princeton New Jersey USA

Abstract

Many new opportunities surround rare pediatric disease drug development, thanks to key advances in regulatory thinking and in the scientific community. As rare disease drug development brings challenges to the developers in terms of limited understanding of natural history, heterogeneity in drug response, as well as difficulty recruiting patients in pivotal trials, there has never been a greater need for quantitative integration. To understand how International Consortium for Innovation and Quality in Pharmaceutical Development (IQ) member companies approach pediatric rare disease drug development, the rare pediatric subteam of the Clinical Pharmacology Leadership Group (CPLG) sponsored Pediatrics Working Group conducted a baseline survey to assess the four main pillars of this quantitative innovation, namely, biomarkers and surrogate end points, statistical methodologies, model‐informed drug development, as well as public–private partnerships. The survey was administered by IQ and yielded 13 evaluable responders from represented companies. This article presents the key findings from this baseline identifying survey, highlighting the key blind spots, and providing insightful expert opinions to address those gaps. In summary, we call an urgent attention to the community on the opportunities to enhance integration and within‐industry learnings from this analysis on aspects related to platform studies, end‐to‐end quantitative integration, and sharing of trial‐level placebo data for better understanding of disease progression and more efficient trial designs. We collectively hope that these findings will stimulate discussion and debate around cross‐industry sharing and collaboration to better delineate principles and further enhance the efficiency of rare pediatric disease drug development.

Publisher

Wiley

Reference23 articles.

1. FDA.Accelerating rare disease cures (ARC) program (2023).

2. US FDA.Rare diseases: natural history studies for drug development. Guidance for Industry.

3. US FDA.Enrichment strategies for clinical trials to support determination of effectiveness of human drugs and biological products. Guidance for Industry(2019).

4. FDA CDER & NIH NCATS.Regulatory fitness in rare disease clinical trials workshop (2022).

5. Rare Diseases Moonshot Initiative.Establishing novel methodological approaches to improve clinical trials for rare and ultra‐rare diseases/small populations on June 21 (Call 4 Topic 4).

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