Child research

STRATEGIC THEMES: LIFECYCLE
Living better with a
clotting disorder
In 1964, Simon van Creveld founded a special clinic for children with hemophilia, a rare
congenital disease. Patients with hemophilia lack clotting factors VIII or IX,
characterized by bleeding in the joints, which leads to crippling joint arthropathy in
adulthood. During the 1960s, these patients were admitted to the hospital for months
and received multidisciplinary care with a physiotherapist, nurse, psychologist and
teacher. Since then, treatment has improved and the Van Creveldkliniek has evolved
into an outpatient clinic for patients of all ages with congenital clotting disorders. It’s
now part of the UMC Utrecht, but maintains its unique concept of multidisciplinary care
provided by a designated team. We provide care for approximately 50% of all patients
with congenital clotting disorders in the Netherlands.
rschutge@umcutrecht.nl
kfische2@umcutrecht.nl
Roger Schutgens, MD, PhD is an adult
hematologist and epidemiologist. He is
Head of the Van Creveldkliniek, Center for
Benign Hematology, Thrombosis and
Hemostasis. He is Chair of the
Anticoagulation Committee at the
UMC Utrecht, Secretary of the Dutch
Society of Hemophilia Treaters and
Secretary of the Dutch Society for
Thrombosis and Hemostasis.
Kathelijn Fischer, MD, PhD is a
pediatric hematologist and clinical
epidemiologist. At the Van Creveldkliniek
(part of the UMC Utrecht), she combines
clinical care for children with clotting
disorders with multidisciplinary research.
Concomitantly, she is the epidemiologist
for two European Hemophilia Registries
(EUHASS and PedNet) and section editor
for ‘Thrombosis and Haemostasis’.
Collecting interdisciplinary data
Our research focuses on patients with hemophilia, where care and research
are combined: All patients with severe hemophilia are seen annually within
our multidisciplinary clinic, and their medical file includes documen tation
of treatment and bleeds, laboratory tests, physical assess ment,
questionnaires about physical activities and quality of life, and consultation
with a hemophilia nurse and social worker. Provision of lifelong care
provides the opportunity to see the effects of pediatric treatment through
to adulthood and provides crosstalk between adult and pediatric specialists.
Data from patient medical files, available since the 1970s, combined with
annual multi disciplinary assessment, have established a longitudinal cohort
study with repeated outcome assessments.
Over the years, we’ve used these data to research effective replacement
therapy, to understand the natural history of hepatitis C infections, to
conduct a prospective study on cardiovascular disease and to investigate
the value of various imaging techniques.
Can patients with clotting disorders do sports?
One current research project is a prospective study on sports participation
and injuries. We started this because many patients are discouraged from
participating in sports, because of perceived bleeding risk. At baseline, we
test strength, endurance and coordination. Then sports participation and
injuries are assessed for a year. The rate of injuries will be compared to
general population data and we will use results of baseline tests to counsel
patients on injury risk in a sports outpatient clinic.
Our research projects strive to improve lifelong multidisciplinary care
for patients with hemophilia and other clotting disorders.
UMC Utrecht - Child research 35