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About the Radboudumc center of expertise
The center Disorders/differences in sex development (DSD) specializes in disorders or variations in sexual, chromosomal and gonadal development.
read moreAbout the Radboudumc center of expertise
Radboudumc’s center of expertise DSD specializes in disorders or variations in sexual, chromosomal and gonadal development. DSD is an abbrevation for Disorders/Differences in Sex Development.Radboudumc’s center of expertise DSD is acknowledged as a center of expertise by the Ministry of Health, Welfare and Sport and is part of the European Netwerk ENDO ERN (European reference network for rare endocrine diseases).
Conditions
Radboudumc’s center of expertise DSD is specialized in, among others (read more in Dutch):
- Onderzoek en begeleiding van pasgeborenen met een onduidelijk geslacht
- Meisjes en vrouwen met 46 XY chromosomen
- Het adrenogenitaal syndroom (AGS)
- MRK syndroom
- Kallmann syndroom
- Turner Syndroom
- Klinefelter Syndroom
Turner or Klinefelter
Sometimes the term DSD is directly associated with ambiguous genitalia. But DSD includes many more conditions involving variations in sexual, chromosomal and gonadal development.
Turner's or Klinefelter's syndrome, for example, are not born with ambiguous genitalia. People with these conditions need a different kind of follow-up. At our centre, we offer personalized care according to international guidelines for all DSD related conditions.
Information only available in Dutch
It is important to be aware that most information about the expertise center can only be found on the Dutch-language website. This means that all relevant details are only available in Dutch. Visitors wishing to consult this information should visit the Dutch-language website to obtain complete and accurate information.
International patients
Everything you need to know as a foreign patient. Especially if you are not insured through the Dutch health care law.
read moreDo you have a question?
We know that people with a form of DSD and/or their family/partner often have questions about their specific condition, but do not know where to turn to. read moreDo you have a question?
Questions that you may have are:- I think my child may have a DSD condition.
- I have problems but do not know if they are related to DSD.
- I have questions about the medication I use
- I have questions about my diagnosis
- I would like more information about a specific condition
- As a practitioner: I am not sure about the gender of a child. Where can I go for consultation?
Ask your question completely free of obligation and anonymously via our contact form.
Your visit
The pediatrician, internist or gynecologist can refer you or your child to our center of expertise. We will then invite you or your child for an appointment at our outpatient clinic. read moreYour visit
The pediatrician, internist or gynecologist can refer you or your child to our center of expertise. We will then invite you or your child for an appointment.
Children
The appointment with your child will take place at the outpatient pediatric clinic, route number 788. You can check in at desk A or B. The administrative officer will check your child's details. Afterwards, you can wait in our waiting room.A nurse will pick you up here. In the consulting room:
- The nurse will measure your child's height, weight and blood pressure.
- The pediatrician will go through all the details with you, ask questions about your child's health and conduct a physical examination. Often a pediatric urologist will be present. We want to avoid unnecessary physical examination, such as genital examination. Sometimes, we will ask you and your child’s permission to take a picture of your child to discuss our findings within the team of specialists.
- Sometimes, we will carry out additional tests, such as blood tests. This is also performed at the outpatient clinic by an experienced pediatric nurse. If your child has extreme fear of needles, an educational staff member can accompany your child or we can apply a sedative ointment before we draw blood.
We will discuss the results of our investigations within our multidisciplinary team. We will usually inform you about this per telephone and, if necessary, plan follow-up appointments.
Adults
Appointments for adults with a DSD clinic will take place at the outpatient clinic for Internal Medicine, Gynecology or Urology, depending on your specific question.Why come to Radboudumc?
Radboudumc offers specialized medical care combined with personal guidance. read moreWhy come to Radboudumc?
People with a variation in sexual, chromosomal and/or gonadal development need multidisciplinary care from a team of specialists and nurses experienced in all forms of DSD. We offer specialized medical care combined with personal guidance.On the one hand, the care consists of a careful evaluation of the condition by a specialized team in order to be able to give a correct diagnosis and recommendations. For this purpose, a laboratory team specialized in measuring sex hormones and other important hormones, is available. Together with the genetics department, we look for a possible hereditary cause. Our urologists and surgeons are trained in the examination of genitals and kidneys.
At the same time, our specialized team of psychologists, sexologists and nursing specialists offers intensive support and coaching to children, adolescents and adults and their parents. Accessible consultation can take place within our network with cooperating clinics.
Radboudumc’s center of expertise DSD is acknowledged as a center of expertise by the Ministry of Health, Welfare and Sport.
Education
At Radboudumc’s DSD center of expertise, we believe it is important to share knowledge. We educate students, co-assistants, doctors in training, medical specialists, nurses, pediatric nurses in training and specialized nurses in training.We contribute to the educational programs:
- Bachelor's and Master's degree in Medicine
- Doctors in training
- Nurses in training
- Psychology program
- Postgraduate medical education
- (Pediatric) nurses in training
- Specialized nurses in training
European Reference Networks
European Reference Networks (ERNs) are virtual networks of healthcare providers from all over Europe. They advocate a European approach to rare diseases. read moreEuropean Reference Networks
European Reference Networks (ERNs) are virtual networks of healthcare providers from all over Europe. They advocate a European approach to rare diseases. Our center of expertise is part of 2 networks:- European Reference Network on Rare Endocrine Conditions
- European Reference Network Urogenital Diseases
ERN's in het Radboudumc
Radboudumc Center of Expertise for Congenital urogenital diseases
The center Congenital urogenital diseases specializes in the care for children who have problems with their urogenital system: the kidneys, bladder, ureter and genitals. read moreMore about this center of expertise
We offer more information on our Dutch webpage. lees meer-
Hedi Claahsen hoogleraar
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Marlies Kempers klinisch geneticus
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Barbara Kortmann kinderuroloog
