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Data Collection & Forms
EBMT Basic Data Set Forms:
All transplantations for Autoimmune Diseases should be registered in the central EBMT ProMISe II (database). The data are collected through : the MED-A form (a basic registration form) and the MED-B form, which contains the transplant specific, the disease specific and the follow-up inserts. For more detailed data, such as immune reconstitution data etc. specific study forms need to be designed. The disease specific inserts are the same for centres reporting to the EBMT and the ABMTR, whereas every registry will use its own transplant specific inserts. Data should be collected from the start of mobilisation. If more than one mobilisation occurs, where appropriate, a form for each should be filled out.
MED-A and MED-B data can be registered into the ProMISe EBMT database in one of the following ways:
- directly on-line by the transplantation centers (which have been authorised, on request, by EBMT to do so)
- by sending the completed cartaceous forms to the local national registry (listed on the last pages of the forms) which will provide to do the registration.
- If there is no national registry , by sending the cartaceous forms to the Paris EBMT Data Office(Faculté de Médecine St-Antoine,27, rue Chaligny 75571 Paris Cedex 12, France, e-mail : chesnel@chusa.jussieu.fr), who will complete the registration..
Newly revised disease specific forms for multiple sclerosis
(MS), juvenile idiopathic arthritis (JIA), rheumatoid arthritis (RA),
systemic sclerosis (SSc) and systemic lupus erythematosus (SLE) can be
downloaded from the Data Collection Forms section. Transplantations for
new disease categories, such as Crohn's, should at present be registered
with a MED-A form, which contains a section identifying this disease.
A MED B form for Crohn's disease is not yet available.
The new data collection forms are used only for currently treated patients
and not retrospectively.
The following forms can be viewed and downloaded from the Registry Section of the website:
a) EBMT MED-B (disease specific) forms:- Rheumatoid Arthritis (RA)
- Juvenile Idiopathic Arthritis (JIA)
- Systemic Sclerosis (SSc)
- Systemic Lupus Erythematosus (SLE)
- Multiple Sclerosis (MS)
b) EBMT MED-A form (equivalent to TED form)
For
more information on MED A-B forms, please consult Registry
section.
