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.

GO TO THE INFORMED CONSENT PAGE LOG IN TO THE EBMT REGISTRY CONTACT US

In order to collect data, the EBMT uses a set of Data Collection Forms (DCFs). These Data Collection Forms are the latest version of the core and extended dataset. The core dataset is the minimum essential data that must be provided by all EBMT Member centres for their consenting patients. Extended dataset is additional information that can be provided by centres to store more details on a patient's medical history.

**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	Version
Patient Registration	/node/5668	/node/5636	2.0

**Diagnosis -** Here you can find all the draft Collections Forms and Completion Guidelines per diagnosis.
Document Name	DCF	Completion Guideline	Version
Acute Leukaemias	/node/5643	/node/5614	2.1
Autoimmune Disorders	/node/5647	/node/5616	2.0
Bone Marrow Failure Syndromes (BMF) inc. Aplastic Anaemia (AA)	/node/5648	/node/5618	2.1
Chronic Leukaemias	/node/5649	/node/5620	2.1
Combined Myelodysplastic Syndrome / Myeloproliferative Neoplasm (MDS/MPN)	/node/5663	/node/5632	2.1
Haemoglobinopathies	/node/5655	/node/5624	2.0
Inborn Errors	/node/5658	/node/5627	2.1
Lymphomas	/node/5662	/node/5631	2.1
Myelodysplastic Syndromes (MDS)	/node/5664	/node/5633	2.1
Myeloproliferative Neoplasms (MPN)	/node/5665	/node/5634	2.1
Other Indication Diagnosis	/node/5667	/node/5635	1.0
Other Non-indication Diagnosis	/node/5666	/node/5641	2.0
Plasma Cell Neoplasms (PCN)	/node/5669	/node/5637	2.1
Solid Tumours	/node/5670	/node/5638	2.0

**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	Version
Disease Status at HCT/CT/GT/IST	/node/5652	/node/5639	2.1
Allogeneic HCT	/node/5644	/node/5615	2.1
Autologous HCT	/node/5646	/node/5617	2.1
Cellular Therapy	/node/5650	/node/5619	2.0
Immunosuppressive Treatment (IST)	/node/5659	/node/5628	2.1
Gene Therapy	/node/5654	/node/5623	1.0
Treatment non HCT/CT/GT/IST	/node/5671	/node/5640	1.1

**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	Version
HCT (both Autologous & Allogeneic)	Day 100	/node/5657	//node/5626	2.1
HCT (both Autologous & Allogeneic)	Annual/Unscheduled	/node/5656	/node/5625	2.1
Cellular Therapy	Day 100, 6 months & Annual/Unscheduled	/node/5651	/node/5621	2.1
Immunosuppressive Treatment (IST)	Day 100	/node/5661	/node/5630	2.1
Immunosuppressive Treatment (IST)	Annual/Unscheduled	/node/5660	/node/5629	2.1
Gene Therapy	Day 100, 6 months & Annual/Unscheduled	/node/5654	/node/5623	1.1

**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	Version
Anonymous Event	/node/5645	/node/5672	2.0

**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

Document	Download
EBMT Registry User Manual for Data Editors and Data Viewers	/node/5117
Introduction to the EBMT Registry Completion Guidelines	/node/5645
List of Chemotherapy Drugs, Agents and Regimens	/node/5645
List of disease classifications	/node/5645
MicroStrategy User Manual - End users	/node/5611
HLA data entry manual	/node/5839/
EBMT Data Capture Forms Updates	/node/5948
OMOP Export from the EBMT Registry	/node/5925/

In order to collect data, the EBMT uses a set of Data Collection Forms (DCFs). These Data Collection Forms are referred to as the version 1.0 of core dataset, now out of use. 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 v1.0 -** 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 v1.0 -** 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 v1.0 -** 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 v1.0 -** 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 v1.0 -** 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

Data Collection

Latest Patient Registry Data Collection Forms

Donor Outcome Registry Data Collection Forms

Manuals and Reference Documents

Patient Registry Data Collection Forms - Archived v1.0