Page 37 - MemoriaER-Eng

www.ciberer.es

Support for preparing Clinical Practice Guidelines, Protocols and

Informative Material for Patients

The numerous CIBERER research groups work to develop products that are clearly
useful in clinical practice in relation to RD, such as clinical guidelines, operating

protocols and informative material for patients.

The fundamental objectives of drawing up CPGs (and protocols) are: to reduce

variability in the use of resources, to reduce uncertainty in clinical practice and to
develop healthcare quality standards.

The objective of drawing up informative material for patients and their families is to

provide reliable information about RD for patients, taking into consideration most

recent scientific evidence, expert recommendations and patient needs. This infor-
mation must consist of relevant content and quality for patients, and especially be

adapted to the level of understanding of patients.
í

Particularly noteworthy in the field of Clinical Practice Guidelines is the work be-
ing done by Work Group on Cancer in Polymalformative Genetic Syndromes (gT-

CSgP) with the participation of several CIBERER units, coordinated by Dr. Víctor

Martnez-González, a CIBERER employee. As described by the coordinator himself,
the objective of this group is to offer biohealthcare professionals up-to-date infor-

mation about the clinical and molecular aspects of syndromes of this type and their í
associated neoplasias to serve as a leader in diagnosis, prevention and follow-up í

with patients and family members, an in teaching and research. To that end, the

GT-CSGP tries to cover this void by establishing various approach strategies from a
broad multidisciplinary perspective.

In 2013, CIBERER compiled Clinical Guidelines, Reports and Opinions of said Re- í
í
ports through its database accessible to the research groups over the Intranet.

Some of these documents were published on the web page and in monthly CIBER- á
ER newsletters.

CIBERER was also actively involved in drawing up a number of Clinical Guidelines á
á
and informative material for patients, such as:

• Title: “Androgen Insensitivity”

Summary: Macrocephaly-Capillary Malformation (M-CM) Syndrome is a com-
plex development disorder characterized by macrocephaly, capillary mal-

formations, overgrowth/asymmetries and neuroimaging abnormalities. The

guideline includes diagnosis and follow-up protocols, the minimum informa-
tion necessary about a M-CM Syndrome patient, as well as a patient informa-

tion sheet.
í

Authors: Dr. Vctor Martnez-Gonzlez and Dr. Pablo Lapunzina (U753) Work
á13
Group on Cancer in Polymalformative Genetic Syndromes. Work Group Coor- 20
dinator: Dr. Vctor Martnez-Gonzlez (U753).
T
OR
íP
http://gtcsgp.files.wordpress.com/2012/02/gt-csgp-m-mc.pdf RE
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A
• Title: “Clinical Guideline for Aniridia, Wilms’ Tumor and Wagr Syn-
NU
N
drome”
A
R /
Authors: Dr. Isabel Lorda-Snchez, Dr. Eddy Rene Gonzlez Flores and Dr. áE
ER
Carmen Ayuso (U704). Work Group Coordinator: Dr. Vctor Martnez-Gonzlez B
(U753).
CI

http://www.ciberer.es/documentos/guias/CSGP-WAGR.pdf
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