Irish Unrelated Bone Marrow Registry (IUBMR)

Data Collection Type
National data collections of health and social care in Ireland
Organisation

Irish Blood Transfusion Service.

Year established

1989

Statement of purpose

To provide a register of people who are willing to donate their bone marrow/stem cells if they are found to match an unrelated patient needing a bone marrow transplant.

Irish Bone Marrow Transplant units which includes CHI, Crumlin and St. James’s Hospital

Coverage (geographical and temporal)

Voluntary participation.

National.

Data collection commenced in 1989 and is ongoing.

Description/Summary

The Irish Unrelated Bone Marrow Registry (IUBMR) is a register of people who are willing to donate their bone marrow/stem cells if they are found to match an unrelated patient needing a stem cell transplant. The IUBMR is part of a worldwide network of unrelated donor registries.

Data users

IBTS.

Data content

Details include: name; sex; date of birth; address; phone number; blood group; Human leukocyte antigen (HLA) type; consent. There are also links to IBTS eProgesa (blood donor) system which provides virology blood group/blood donation history.

Data dictionary

Not available.

National-level identifier variables

No.

Equity stratifiers

Place of Residence & Gender

Data collection methodology

Volunteers who are willing to be searched as potential bone marrow donors for patients can apply to be on the register via an online-form.

On-going data collection.

Clinical coding scheme

Not in use.

Size of national collection

Approximately 700–1,000 records created on average annually (donors recruited).

Publication frequency

Annual reports.

Accessing data

IBTS annual reports available publicly on www.giveblood.ie

Open data portal access

No.

Email contact
Telephone contact