Norwegian Rare Bone Disorder Registry

The registry is established by the Section of Pediatric Orthopeadics and Reconstructive Surgery at Rikshospitalet, Oslo University Hospital. This section serves as the Norwegian national surgery unit for treatment of congenital lower limb deformities in children.

The registry has been developed in close collaboration with the TRS National Resource Center for Rare Disorders. TRS is the national resource center responsable for the rare, congenital bone disorders (skeletal dysplasias).

Would you like to participate?

To participate, you must provide informed consent for yourself or on behalf of your child. Participation requires consent from each participant (aged 16 and older). For children aged 0-16 years, digital consent from both guardians is required to register the child in the registry.

The registry has a digital consent solution and requires logging in with BankID.

You can participate by clicking on the link.

Consent form

All individuals with a rare, congenital bone disorder (skeletal dysplasia) are welcome to participate in the registry.

When you register, you will be asked to provide health information that will be stored in the registry. Approximately five years later, we will contact you again for an update.

Those who are registered will receive information about potential studies, clinical trials with new medications, and similar initiatives. The aim is for the registry to enhance knowledge about rare, congenital bone disorders and provide you and future generations with the best possible care and treatment.

The main purpose of the registry is to gain an overview of all individuals in Norway with a rare congenital bone disorder (skeletal dysplasias) and follow them over time.

The registry will contribute to providing data for research at a national level within various subgroups of patients with skeletal dysplasias, thereby increasing knowledge about epidemiological factors, disease mechanisms, and the interaction between genetic, environmental, and clinical factors affecting the disease. The registry will also contribute to ensuring the quality of pharmacological treatment and other forms of treatment. Additionally, the registry will assist in identifying, implementing, monitoring, and optimizing treatment and healtcare service in Norway.

The registry is a research and quality registry based on consent, with approval from the Norwegian Data Protection Authority (Datatilsynet). Oslo University Hospital, under the management of the CEO, serves as the data controller.

The overall responsibility for the registry lies with head of department of Children Ortopaedics at Oslo University Hospital and Associate Professor Joachim Horn, who also leads the Norwegian national surgery unit for treatment of congenital lower limb deformities in children.

The daily coordinating work are managed by coordinator Anne Marthe S. Rysst-Heilmann.

The registry has a professional council tasked with ensuring its breadth of expertise and providing advice on applications for data usage.

Participation in the registry is voluntary, and it requires digital consent from each participant. For children aged 0-16 years, digital consent from guardians is required. When participants reach the age of 16, a new consent is required. You need BankID to participate in the registry.

The registry will collect and store information regarding patients' assessments, treatments, and follow-ups. All information will be stored in de-identified form. The collected data will be treated confidentially, and all individuals with access to the registry are bound by confidentiality obligations.

No data will be released for commercial purposes unless it directly benefits the treatment of patients with the relevant diagnoses, and all ethical requirements and considerations for privacy are met.

Currently, there are no studies utilizing data from the registry.

Relevant links