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Data collection forms

In this section, you will find the MED-AB data collection forms for HSCT registrations and for cell therapy (non HSCT registrations) and the corresponding manuals.

 

For HSCT registrations

The EBMT produces detailed disease specific and HSCT specific forms called MED-B.

A Disease specific Med-B consists of an initial information sheet common to all diseases and procedures, a detailed disease specific pre-HSCT section detailing the diagnosis and pre-HSCT treatment, and a follow up section detailing complications and events that happened after the HSCT. The above is complemented with two HSCT specific Med-B forms: Allograft and Autograft.

All registrations must include a disease specific form and an HSCT specific form. The follow up section of each disease specific form should be submitted yearly. Although not mandatory, the Med-B forms are the basis for all registry-based scientific studies performed within the Working Parties, and the EBMT encourages all centres to fill them in.

The MED-A  form contains what is considered the Minimum Essential Data. It is mandatory that these data be submitted for all patients. The First report consists of a common set of data that allows registration of the patient, the summary of the procedures and the status at 100 days, and a series of disease specific forms one of which must always accompany the submission (HSCT). The Follow up report consists of a data set common to all diseases and procedures that allows complications and events taking place after the procedure to be registered. The follow up report should be submitted yearly. The submission of MED-A data is a requirement for a centre to hold full membership in the EBMT, but as the MED-A data is part of the MED-B forms, if MED-B forms are submitted, the MED-A form is unnecessary.

The document MED-AB Forms Manual, which details the definition of individual MED-AB items, has been written to help with the filling of these forms. This is a very extensive document and it is meant to be consulted on-line as additions and corrections are frequent. 


For Cell therapy (non HSCT) registrations

The Cell Therapy Registry (CTR) aims to collect data on foetal or adult stem cells, or progenitor cells used for treatment other than hematopoietic stem cell transplantation (HSCT) or donor lymphocyte infusion (DLI), as well as data on the clinical characteristics and outcome of the patients. To this purpose a Med-A for Cell Therapy has been created. It consists of only two pages.

If doubts appear as to how to complete any forms, they should be addressed to the national registry or EBMT Registry Office, which will ensure expert advice is sought in each case. It is very important that the people filling in these forms do point out ambiguities, lack of clarity, etc. Any criticism can only improve the forms and manuals.


Download forms and manuals

Please click on the links below to download or print the MED-AB paper forms in .pdf format.

If you are using the forms for the first time, please download Submitting data to the EBMT, which contains further information and National Registry contact details. For help filling out the forms, please refer to the manuals or contact the EBMT Registry Office.


For HSCT registrations

MED-A forms

Includes the first report; disease classification sheets; HLA cover page; follow up and appendix.

MED-A


MED-B forms

Include all MED-A items and are divided into subsets by disease and type of HSCT. Each disease specific form contains the following: general information, disease specific information, disease specific follow up.


HSCT specific One of the forms below must accompany each disease set:

ALLOGRAFT  Addition of aGvHD items to allow registration of aGvHD after 100 days of HSCT; (Jun 11) Addition of multiple chimaerism tests to allow registration of different dates for different donors if applicable.

AUTOGRAFT


Disease specific At least one disease form must be submitted with each transplant:

 

ACUTE LEUKAEMIA
AMYLOIDOSIS
BONE MARROW FAILURE SYNDROME
CHRONIC MYELOID LEUKAEMIA
CHRONIC LYMPHOCYTIC LEUKAEMIA
HAEMOGLOBINOPATHY
INHERITED DISORDERS
JUVENILE IDIOPATHIC ARTHRITIS
LYMPHOMA
MULTIPLE SCLEROSIS
MYELODYSPLASTIC SYNDROME or MD/MP NEOPLASM or SECONDARY ACUTE LEUKAEMIA
MYELOPROLIFERATIVE NEOPLASM
PLASMA CELL DISORDERS inc. MULTIPLE MYELOMA
SOLID TUMOURS
SYSTEMIC LUPUS ERITHEMATOSUS
SYSTEMIC SCLEROSIS
 

 



Additional forms

Cover page for Histocompatibility reports: for submission of the original HLA typing report of patients already registered. 

Total Body Irradiation

 

Clinical Manuals and Reference Documents

Basic transplant registration: comprehensive guide to the data collection forms, using the MED-A as a guide, with information on the EBMT and data submission. This is a PowerPoint presentation that can be used for training (Apr 2012)

MED-AB Forms Manual: Guide to completion of the MED-AB forms (Jan 2011)

List of disease classifications: Disease synonyms and subclassifications as applied in the Registry database

List of drug names and synonyms: List covering the different names drugs may be known by in different countries or contexts. It also contains some information on chemotherapy protocols. 

Summary of Disease status and Response by disease : Tabular description of disease status or responses relevant for each disease.

  

For Cell therapy (non HSCT) registrations

Coming soon.jpgCell Therapy MED-A form

Cell therapy manual – A guide to completion of the Cell Therapy MED-A form

 
MEDAB0084.pdfMEDAB0084.pdf
 

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