What is RI-SDS?
RI-SDS (Italian Shwachman-Diamond Syndrome Registry) is a research project dedicated to data collection and analysis for patients with SDS, the aim being to further scientific knowledge and treatment of this rare disease.
This project has been approved by the Ethics Committee of the Verona University Hospital Board (Project n. CE 1944, 6/4/2011).
What are the aims of RI-SDS?
The rationale for the creation of the Italian SDS Registry is the need to:
Know and understand
- distribution and recurrence risk in Italy
- natural history and evolution of the syndrome
- variability of symptoms
- features affecting prognosis
- effective treatments
Update
patients, families and healthcare professionals dealing with SDS
Promote
- interventions for symptom control and treatment
- targeted research projects
How to enrol in RI-SDS
Participation is voluntary, requiring only informed consent signed by the patient, or by the parents of patients under 18.
Each patient's data are stored in fully anonymous form: in compliance with current data protection regulations, s/he is allocated a code that enables identification only by the Registry administrators.
When the patient joins RI-SDS, s/he is requested to complete forms with socio-biographical and clinical data. RI-SDS periodically updates data with input from the data administrators and/or patients/parents.
For further information, click here
The Italian SDS Registry is supported by the
Italian Shwachman-Diamond Syndrome Association (AISS)
