Spina bifida is a malformation of the spine and spinal cord occurring during the early stages of pregnancy. Rennes university hospital was accredited as a rare disease Referral centre for Spina Bifida in 2007.
Spina bifida and its associated pathologies are rare: it is therefore recommended to contact an expert centre where doctors and paramedics have developed a specific expertise in the clinical management of the disease. This illness is complex and is not limited to the nervous system but involves different systems.
At the referral centre, you will benefit from multidisciplinary care: each specialist will bring its knowledge and expertise. Your care will not be limited to a purely medical approach and you will also have the opportunity to consult with a social worker.
The centre aims to :
- Improve the offer of care at the national level, in coordination with the specialist centres
- Promote educational and information activities for prevention aimed at the affected population
- Draw up good practice recommendations for patient care
- Build up a national network of diagnostic monitoring and patient care
- Boost and coordinate research
- Identify medical, genetic and other risk factors
The multidisciplinary assessment at the Referral centre for Spina Bifida
Before coming to the centre
The nurse will organise a telephone interview with you. This appointment, which will last around one hour, will allow us to inform you about your situation and to learn about your requirements.
Following this interview, we may advise you to consult a doctor nearer to you, in a specialist centre or one of the local doctors who may become your contacts.
If an assessment at the referral centre is planned, you will receive a notification letter as well as some forms to fill in. You will also be required to obtain and put together all of the documentation that you already have regarding your health and bring it with you when you come to the centre.
During your visit to the centre
We advise you to be accompanied by a person close to you who will help you to better understand the different information and to identify the different staff members whom you will be meeting.
You will see several specialists and undertake examinations. The nurse will guide you and ensure the link between you and different members of the team. At the end of the assessment, your medical situation will be dicussed and reviewed with you.
You will go home with instructions on actions to undertake to help you feel better (change your medication, modify a habit, introduce a new activity into your daily routine, undertake administrative procedures if necessary, etc.)
After your visit to the centre
Staff will meet to share the conclusions of the different examinations, assess your situation as a whole and coordinate recommendations. You will receive a written report of the conclusions of the staff meeting.