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Rare-Disease Patient & Caregiver Sample — A Methodology for Ultra-Low-Incidence Recruitment
Methodology Paper No. 1362026 Edition
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Abstract
A vendor-neutral methodology for recruiting rare-disease patients and caregivers — a multi-source recruitment funnel under one screener, confirmed-diagnosis validation, respondent dignity, and the ethics and consent that sensitive ultra-low-incidence research demands. Grounded in the FDA Patient-Focused Drug Development guidance series, the ICC/ESOMAR Code, ESOMAR 37, and ISO 20252.
Suggested headline & dek
Rare-Disease Patient & Caregiver Sample — A Methodology for Ultra-Low-Incidence Recruitment
A multi-source recruitment funnel under one screener, confirmed-diagnosis validation, respondent dignity, and the ethics and consent that sensitive ultra-low-incidence research demands.
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APA
CatalystMR Research Team. (2026). Rare-Disease Patient & Caregiver Sample — A Methodology for Ultra-Low-Incidence Recruitment (Methodology Paper No. 136). CatalystMR. https://www.catalystmr.com/insights/methodology-papers/rare-disease-patient-caregiver-sample/
BibTeX
@techreport{catalystmr_mp136,
author = {{CatalystMR Research Team}},
title = {Rare-Disease Patient & Caregiver Sample — A Methodology for Ultra-Low-Incidence Recruitment},
institution = {CatalystMR},
type = {Methodology Paper},
number = {No. 136},
year = {2026},
url = {https://www.catalystmr.com/insights/methodology-papers/rare-disease-patient-caregiver-sample/}
}
RIS
TY - RPRT
AU - CatalystMR Research Team
TI - Rare-Disease Patient & Caregiver Sample — A Methodology for Ultra-Low-Incidence Recruitment
T2 - CatalystMR Methodology Papers
PB - CatalystMR
PY - 2026
M1 - No. 136
UR - https://www.catalystmr.com/insights/methodology-papers/rare-disease-patient-caregiver-sample/
ER -
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