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Consortium for the lifespan examination of ADHD registry (Clear): An update on methodology and recruitment

Published online by Cambridge University Press:  16 April 2020

R. Lasser ,
C. Eksteen ,
M. Brod ,
L. Politza ,
M. Dauphin ,
P. Asherson ,
M. Huss  and
S. Tetali
R. Lasser
Affiliation:
Shire Development Inc., Wayne, PA, USA
C. Eksteen
Affiliation:
Shire Clinical Development and Medical Affairs, Basingstoke, UK
M. Brod
Affiliation:
The Brod Group, Mill Valley, CA, USA
L. Politza
Affiliation:
Shire Development Inc., Wayne, PA, USA
M. Dauphin
Affiliation:
Shire Development Inc., Wayne, PA, USA
P. Asherson
Affiliation:
MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, King's College London, London, UK
M. Huss
Affiliation:
Child and Adolescent Psychiatry, Johannes Gutenberg-University Mainz, Mainz, Germany
S. Tetali
Affiliation:
Shire Development Inc., Wayne, PA, USA

Abstract

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Introduction

ADHD is often unrecognised and untreated, particularly in Europe. There is a need for improved understanding of ADHD in adults and its impact on patients across the lifespan. Registries allow for multiple real-world comparisons based on assessment of patients that are typically excluded from clinical studies. Data describing the cost, burden and consequences of ADHD are essential to inform clinicians, regulatory agencies, payers and patients about the condition.

Objectives

To address the gaps in our current understanding of the care and cost of treating adult patients with ADHD by documenting real-life experiences.

Methods

A prospective, longitudinal, observational study of adults > 18 years with ADHD, designed to follow 2500 patients in the USA, UK, Germany, The Netherlands and Canada for a minimum of 5 years.

In year one, patients will be asked questions regarding:

the impact of childhood diagnosis and/or treatment on adult ADHD, long- and short-term treatment patterns and their consequences, differences between ADHD treatments, the relationship between disease severity and compliance with treatment, increased tendency to risk behaviour/substance abuse, costs.

In subsequent years, topics may be expanded to include the transition into adulthood and healthcare access for young adults.

Results

Ten sites are currently recruiting, with 45 patients enrolled up to 7 October 2010. Challenges associated with initiating a global registry in North America and Europe will be discussed.

Conclusion

Data generated from CLEAR will help improve the global understanding of the longitudinal impact of ADHD.

Supported by Shire Development, Inc.

Type
P01-278
Information
European Psychiatry , Volume 26 , Issue S2: Abstracts of the 19th European Congress of Psychiatry , March 2011 , pp. 279
Copyright
Copyright © European Psychiatric Association 2011
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