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National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Sciences Policy; Committee on Processes to Evaluate the Safety and Efficacy of Drugs for Rare Diseases or Conditions in the United States and the European Union; Shore CK, Worku TL, Smith CW, et al., editors. Regulatory Processes for Rare Disease Drugs in the United States and European Union: Flexibilities and Collaborative Opportunities. Washington (DC): National Academies Press (US); 2024 Oct 30.

Cover of Regulatory Processes for Rare Disease Drugs in the United States and European Union

Regulatory Processes for Rare Disease Drugs in the United States and European Union: Flexibilities and Collaborative Opportunities.

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Acronyms and Abbreviations

AACC

Accelerated Approval Coordinating Council

AAV

adeno-associated virus

ACD

alternative and confirmatory data

AIDS

acquired immunodeficiency syndrome

ARC

Accelerating Rare Disease Cures program

ATMP

Advanced Therapy Medical Products

BLA

biologics license application

BPCA

Best Pharmaceuticals for Children Act

CBER

Center for Biologics Evaluation and Research

CDER

Center for Drug Evaluation and Research

CDRH

Center for Devices and Radiological Health

CHMP

Committee for Medicinal Products for Human Use

CID

Complex Innovative Trial Design

CIRS

Centre for Innovation in Regulatory Science

CMS

congenital myasthenic syndrome

CoGenT

Collaboration on Gene Therapies Global Pilot

COMP

Committee for Orphan Medicinal Products

CTIS

Clinical Trial Information System

CTTI

Clinical Trials Transformation Initiative

DMD

Duchenne muscular dystrophy

EC

European Commission

ECD

Erdheim-Chester disease

eCTD

electronic common technical document

EMA

European Medicines Agency

EPAR

European public assessment report

ERG

Eastern Research Group

EU

European Union

EUA

emergency use authorization

EU-IN

EU Innovation Network

FA

Friedreich’s ataxia

FD&C Act

Federal Food, Drug and Cosmetic Act

FDA

U.S. Food and Drug Administration

FDARA

Food and Drug Administration Reauthorization Act

FDASIA

Food and Drug Administration Safety and Innovation Act

FDORA

Food and Drug Omnibus Reform Act

GAO

U.S. Government Accountability Office

GD1

Gaucher disease type 1

HC

Health Canada

HHS

U.S. Department of Health and Human Services

HIPAA

Health Insurance Portability and Accountability Act

HIV

human immunodeficiency virus

ICD

International Classification of Diseases

ICH

International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use

IND

investigational new drug

iPSP

initial pediatric study plan

IRB

institutional review board

ITF

Innovation Task Force

LADDER

Linking Angelman and Dup15q Data for Expanded Research

LEADER 3D

Learning and Education to Advance and Empower Rare Disease Drug Developers

MAA

Marketing Authorization Application

MDRI

multi-domain responder index

MHLW

Ministry of Health, Labour and Welfare of Japan

MIDD

Model-Informed Drug Development Paired Meeting Program

NAS

new active substance

NCATS

National Center for Advancing Translational Sciences

NDA

new drug application

NIH

National Institutes of Health

NMA

network meta-analysis

NME

new molecular entity

NORD

National Organization for Rare Disorders

OBRR

Office of Blood Research and Review

OCE

Oncology Center of Excellence

ODD

orphan drug designation

OMP

orphan medicinal product

OND

Office of New Drugs

OOPD

Office of Orphan Products Development

OTP

Office of Therapeutic Products

OVRR

Office of Vaccines Research and Review

PCWP

Patients’ and Consumers’ Working Party

PDCO

Paediatric Committee

PDUFA

Prescription Drug User Fee Act

PEC

Patient Engagement Collaborative

PED

patient experience data

PFDD

patient-focused drug development

PIP

paediatric investigational plan

PMDA

Pharmaceuticals and Medical Devices Agency

PREA

Pediatric Research Equity Act

PRIME

Priority Medicines program

PRO

patient-reported outcome

PRV

priority review voucher

PSA

Parallel Scientific Advice

QSP

quantitative systems pharmacology

RACE Act

Research to Accelerate Cures and Equity for children Act

RBI

randomization-based inference

RCT

randomized controlled trial

RDCA-DAP®

Rare Disease Cures Accelerator-Data and Analytics Platform

RDEA

Rare Disease Endpoint Advancement Pilot Program

RMAT

regenerative medicine advanced therapy

RPM

regulatory project manager

RTOR

real-time oncology review

RWD

real-world data

RWE

real-world evidence

SMA

spinal muscular atrophy

SME

small or medium-sized enterprise

SMN

survival motor neuron 1 (gene)

START

Support for clinical Trials Advancing Rare disease Therapeutics

TGA

Therapeutic Goods Administration

Copyright 2024 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK609375

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