PAtient-Centric epilepsy clinical trIal model For Improved health outcomes using Cannabidiol (PACIFIC study)—a methodology for developing patient-centred clinical trials in rare epilepsy syndromes

This study demonstrates the feasibility of participatory co-design in developing rare epilepsy trial protocols. Embedding patient perspectives and adopting innovative methodologies can enhance scientific rigour, build trust, and strengthen the clinical and policy impact of rare disease research.

Authors

Linda Truong (ORCID: https://orcid.org/0000-0003-3808-7562)
Tegan Stettaford (ORCID: https://orcid.org/0000-0003-2279-1811)
Katrina Watt (ORCID: https://orcid.org/0009-0007-0669-935X)
Kris Pierce
John A. Lawson
Nafiseh Ghafournia
Jennifer H. Martin
Pavel Anetko
Jiyoung Shin

Institutions

Australian Research Council (AU)
Goulburn Base Hospital (AU)
John Hunter Hospital (AU)
UNSW Sydney (AU)
Clinical Trial and Consulting (US)
Sydney Children's Hospital (AU)
Tuberous Sclerosis Association (GB)
John Hunter Children's Hospital (AU)
University of Newcastle Australia (AU)

Publication Details

Journal: BMC Medical Research Methodology
Published: 2026-01-16
DOI: https://doi.org/10.1186/s12874-025-02757-1
Primary Topic: Cannabis and Cannabinoid Research
Type: article
Field-Weighted Citation Impact: 0.00

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article

PAtient-Centric epilepsy clinical trIal model For Improved health outcomes using Cannabidiol (PACIFIC study)—a methodology for developing patient-centred clinical trials in rare epilepsy syndromes

Linda Truong, Tegan Stettaford, Katrina Watt, Kris Pierce et al.

Jan 16, 2026

BMC Medical Research Methodology

Cannabis and Cannabinoid Research

article

PAtient-Centric epilepsy clinical trIal model For Improved health outcomes using Cannabidiol (PACIFIC study)—a methodology for developing patient-centred clinical trials in rare epilepsy syndromes

Linda Truong, Tegan Stettaford, Katrina Watt, Kris Pierce, John A. Lawson, Nafiseh Ghafournia, Jennifer H. Martin, Pavel Anetko, Jiyoung Shin

January 16, 2026article en

Abstract

This study demonstrates the feasibility of participatory co-design in developing rare epilepsy trial protocols. Embedding patient perspectives and adopting innovative methodologies can enhance scientific rigour, build trust, and strengthen the clinical and policy impact of rare disease research.

BMC Medical Research MethodologyVol. 26(1)

Australian Research Council (AU), Goulburn Base Hospital (AU), John Hunter Hospital (AU), UNSW Sydney (AU), Clinical Trial and Consulting (US), Sydney Children's Hospital (AU), Tuberous Sclerosis Association (GB), John Hunter Children's Hospital (AU), University of Newcastle Australia (AU)

Openalex Percentile: Top 84%

Cannabis and Cannabinoid Research

DOI Open Access PDF OpenAlex

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PAtient-Centric epilepsy clinical trIal model For Improved health outcomes using Cannabidiol (PACIFIC study)—a methodology for developing patient-centred clinical trials in rare epilepsy syndromes — Linda Truong, Tegan Stettaford, et al. · BMC Medical Research Methodology (2026) | TGRS Research Map | TGRS