Top Back to top

Data Collection

The EBMT requests from all member centres that all patients undergoing an HCT, treatment for aplastic anaemia, or any type of cellular therapy be registered in the EBMT Registry. The EBMT Registry Data Collection Forms aid the collection of all the data that is required to be submitted to the EBMT Registry. 

Centres are responsible for ensuring that patients and donors consent to their data being transferred to the EBMT, prior to collecting data for submission to the EBMT. Informed consent templates and further instructions on obtaining informed consent can be found on the Informed Consent page.

Patient Registry Data Collection Forms

In order to collect data, the EBMT uses a set of Data Collection Forms (DCFs). These Data Collection Forms are referred to as the core dataset. This is the minimum essential data that must be provided by all EBMT Member centres for their consenting patients. 

The forms are organised in the corresponding event types in the EBMT Registry. Completion guidelines are available for every Data Collection Form. An introduction document to the completion guidelines can be found here


Patient Registration

Here you can find the Data Collection Form and Completion Guideline for all new patient registrations, for all diagnoses and treatment types.

Document Name DCF Completion Guideline
Patient Registration           /node/5033 /node/5034

Diagnosis

Here you can find all the Data Collections Forms and Completion Guidelines per diagnosis.

Document Name DCF Completion Guideline
Acute Leukaemias /node/5063 /node/5067
Autoimmune Disorders /node/5064 /node/5068
Bone Marrow Failure Syndromes (BMF) inc. Aplastic Anaemia (AA) /node/5065 /node/5069
Chronic Leukaemias /node/5066 /node/5070
Combined Myelodysplastic Syndrome / Myeloproliferative Neoplasm (MDS/MPN) /node/5084 /node/5075
Haemoglobinopathies /node/5080 /node/5071
Inborn Errors /node/5081 /node/5072
Lymphomas /node/5082 /node/5073
Myelodysplastic Syndromes (MDS) /node/5083 /node/5074
Myeloproliferative Neoplasms (MPN) /node/5085 /node/5076
Other Indication Diagnosis /node/5086 /node/5077
Other Non-indication Diagnosis /node/5329

/node/5330

Plasma Cell Disorders (PCD) inc. Multiple Myeloma (MM) /node/5087 /node/5078
Solid Tumours /node/5088 /node/5079

Treatment

Here you can find all the Data Collections Forms and Completion Guidelines per treatment, including cellular therapy and immunosuppressive treatments.

Document Name DCF Completion Guideline
Disease Status at HCT/CT/IST /node/5038 /node/5043
Allogeneic HCT /node/5035 /node/5039
Autologous HCT /node/5036 /node/5040
Cellular Therapy /node/5037/ /node/5041/
Immunosuppressive Treatment (IST) /node/5044 /node/5042

Follow-up

Here you can find all the Data Collections Forms and Completion Guidelines for registering Follow-ups per treatment, including cellular therapy and immunosuppressive treatments.

Document Name Timepoint DCF Completion Guideline
HCT (both Autologous & Allogeneic) Day 100 /node/5093 /node/5048
HCT (both Autologous & Allogeneic) Annual/Unscheduled /node/5051 /node/5047
Cellular Therapy Day 100, 6 months & Annual/Unscheduled /node/5045/ /node/5046
Immunosuppressive Treatment (IST) Day 100 /node/5054 /node/5050
Immunosuppressive Treatment (IST)   Annual/Unscheduled /node/5053 /node/5049

Anonymous Events

Here you can find the Data Collection Form and Completion Guideline for registering non-consenting patients, as per your Centre's requirements.

Document Name DCF Completion Guideline
Anonymous Event         /node/5055 /node/5056

Draft Patient Registry Data Collection Forms v2.0

In order to collect data, the EBMT uses a set of Data Collection Forms (DCFs). These draft Data Collection Forms are referred to as the version 2.0 of the core dataset. This is the minimum essential data that must be provided by all EBMT Member centres for their consenting patients. 


Draft Patient Registration

Here you can find the draft Data Collection Form and Completion Guideline for all new patient registrations, for all diagnoses and treatment types.

Document Name DCF Completion Guideline
Patient Registration           /node/5668 /node/5636

Draft Diagnosis

Here you can find all the draft Data Collections Forms and Completion Guidelines per diagnosis.

Document Name DCF Completion Guideline
Acute Leukaemias /node/5643 /node/5614
Autoimmune Disorders /node/5647 /node/5616
Bone Marrow Failure Syndromes (BMF) inc. Aplastic Anaemia (AA) /node/5648 /node/5618
Chronic Leukaemias /node/5649 /node/5620
Combined Myelodysplastic Syndrome / Myeloproliferative Neoplasm (MDS/MPN) /node/5663 /node/5632
Haemoglobinopathies /node/5655 /node/5624
Inborn Errors /node/5658 /node/5627
Lymphomas /node/5662 /node/5631
Myelodysplastic Syndromes (MDS) /node/5664 /node/5633
Myeloproliferative Neoplasms (MPN) /node/5665 /node/5634
Other Indication Diagnosis /node/5667 /node/5635
Other Non-indication Diagnosis /node/5666

/node/5641

Plasma Cell Disorders (PCD) inc. Multiple Myeloma (MM) /node/5669 /node/5637
Solid Tumours /node/5670 /node/5638

Draft Treatment

Here you can find all the draft Data Collections Forms and Completion Guidelines per treatment, including cellular therapy and immunosuppressive treatments.

Document Name DCF Completion Guideline
Disease Status at HCT/CT/IST /node/5652 /node/5639
Allogeneic HCT /node/5644 /node/5615
Autologous HCT /node/5646 /node/5617
Cellular Therapy /node/5650 /node/5619
Immunosuppressive Treatment (IST) /node/5659 /node/5628
Gene Therapy /node/5654 /node/5623
Treatment non HCT/CT/GT/IST /node/5671 /node/5640

Draft Follow-up

Here you can find all the draft Data Collections Forms and Completion Guidelines for registering Follow-ups per treatment, including cellular therapy and immunosuppressive treatments.

Document Name Timepoint DCF Completion Guideline
HCT (both Autologous & Allogeneic) Day 100 /node/5657 //node/5626
HCT (both Autologous & Allogeneic) Annual/Unscheduled /node/5656 /node/5625
Cellular Therapy Day 100, 6 months & Annual/Unscheduled /node/5651 /node/5621
Immunosuppressive Treatment (IST) Day 100 /node/5661 /node/5630
Immunosuppressive Treatment (IST)   Annual/Unscheduled /node/5660 /node/5629
Gene Therapy Day 100, 6 months & Annual/Unscheduled /node/5654 /node/5623

Draft Anonymous Events

Here you can find the draft Data Collection Form and Completion Guideline for registering non-consenting patients, as per your Centre's requirements.

Document Name DCF Completion Guideline
Anonymous Event         /node/5645 /node/5672

Donor Outcome Registry Data Collection Forms

Donor Outcome Registry Data Collection Forms

Here you can find all the Data Collections Forms and Completion Guidelines for registering donor information in the Donor Outcome Registry.

Document Name DCF Completion Guideline
Donor Registration /node/5058 /node/5062
Donation Procedure and Day 30 Follow-up /node/5059 /node/5061
Long-term Follow-up or Death Reporting /node/5057 /node/5060

Manuals and Reference Documents

Document Download
EBMT Registry User Manual for Data Editors and Data Viewers /node/5117
Introduction to the EBMT Registry Completion Guidelines /node/5089/
List of Chemotherapy Drugs, Agents and Regimens /node/5090
List of disease classifications /node/5140
MicroStrategy user manual /node/5140