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Core sets of outcome measures and definition of improvement for juvenile systemic lupus erythematosus and juvenile dermatomyositis

Objective

Juvenile systemic lupus erythematosus (JSLE), and juvenile dermatomyositis (JDM) are rare conditions associated with substantial morbidity/monetary costs, and with disease- and age-related characteristics, that differentiate them from the analogous adult counterpart.
Their treatment is still unsatisfactory and drug efficacy evaluation is hampered by the absence of reliable and standardised measures of disease outcome. Consequently, drug safety and efficacy data tends to be from small, uncontrolled, non-comparable case series.

Our goals are:
1) to identify a core set of outcome variables for JSLE and JDM, and
2) to use the core sets to develop a single definition of improvement for JSLE and JDM, to determine whether individual patients respond adequately to therapy.

These goals will be the second effort of a 22 countries European research network called "Paediatric Rheumatology International Trials Organisation - PRINTO" created with a grant under the 4 Framework Programme.
It is our basic premise that without a wide European involvement these studies will never be conducted.

Funding Scheme

CON - Coordination of research actions

Coordinator

ISTITUTO GIANNINA GASLINI
Address
Largo Gerlamo Gaslini 5
16148 Genova
Italy

Participants (1)

IRCCS POLICLINICO SAN MATTEO - ISTITUTO DI RICOVERO E CURA A CARATTERE SCIENTIFICO
Italy
Address
P. Le Golgi 2
27100 Pavia