Global Registration Identifier for Donors (GRID) Overview

Transcription

1 Global Registration Identifier for Donors (GRID) Overview Martin Maiers Director, Bioinformatics Research National Marrow Donor Program/Be The Match CIBMTR On behalf of thewmda GRID Task Force

2 GRID Overview Introducing GRID The Global GRID Project Basic Requirements and Structure of the GRID Implementation Phases and Next Steps

3 Key Definitions Issuing Organisation (IO): an establishment that issues identifiers to potential adult donors; includes donor registries and some donor centers Registry: an organisation responsible for coordination of the search for unrelated donors for potential recipients Blood and Marrow Donors Worldwide (BMDW): a global database of stem cell donors European Marrow Donor Information System (EMDIS): a data exchange network between bone marrow donor registries 8 ICCBBA: (originally derived from International Council for Commonality in Blood Banking Automation) is the international standards organization for critical information carried on labels of medical products of human origin, including bone marrow and cord blood

4 GRID - Why do it? Goal: Create globally unique identifiers for potential hematopoietic progenitor cell registry donors GRID will: Eliminate the possibility of two donors having the same identifier across the global network on BMDW Reduce the risk of misidentification of donors GRID is for DONORS, not donations; GRID will not replace existing product identifiers such as the ISBT 128 Donation Identification Number 9

5 Question 1 GRID stands for: a. Global Redesign of Identification for Donors b. Good Riddance c. Getting Real Individual Definition d. Global Registration Identifier for Donors

6 The Case GRID will ensure this never happens again, as it will provide a standard, consistent format for donor identification across the world

7 The Beginning of GRID A Global Cooperative Project Representatives from WMDA and ICCBBA worked together to develop the GRID design and structure WMDA has a Memorandum of Understanding with ICCBBA to assign and manage the list of issuing organization numbers and support the development of associated standards documents.

8 Design and Structure of the GRID Standard, fixed length: With three parts: 1. Issuing Organization Number (ION)--- always 4 digits 2. Donor Identifier--- always 15 characters 3. Check Digit; used to improve manual data entry

9 What is an ION? Key details ION = Issuing Organization Number ION is always the first 4 digits Assigned by WMDA and managed by ICCBBA An ION is only assigned once to any Issuing Organisation

10 A few words about the Check Character Used for process control to verify accurate keyboard entry of the GRID All software that prints a GRID needs to compute the check digit and display next to the GRID Check character is computed from the 19 GRID characters using the ISO 7064 Mod 37-2 algorithm Software for entering a GRID should require the user to also enter the GRID check character(s) Software should compare the computed check character(s) to the entered check character(s) Algorithm is simple to implement; refer to this document on the ICCBBA Website: IG-038 Implementation Guide: Use of the Global Registration Identifier for Donors [Data Structure 037]

11 Question 2 What is an ION? a. A charged sub-atomic particle b. A 4-digit number assigned to Issuing Organizations c. Acronym for Issuing Organization Number d. Both B and C

12 Question 3 NMDP/Be The Match is: a) A donor registry b) An Issuing Organisation c) Located in the USA state of Minnesota d) All of the above

13 What is the Donor Identifier? Key details Always 15 characters Allows IOs to embed existing donor identifiers RULE: Must use numbers and upper case alpha letters only, without symbols or punctuation Leading zeros may be used if existing number contains fewer than 15 characters

14 Question 4 Issuing Organizations may use/embed their existing local donor identifiers in the GRID: a. True, provided the rules for GRID format are followed b. False

15 Question 5 The rules for format of the Donor Identifier do not allow which of the following: a. Numerals b. Upper case alpha characters c. Lower case alpha characters d. Punctuation marks e. C and D

16 Example: Placement of Existing Identifier in GRID IO has been assigned the ION 3054 Existing donor identifier is Ab-12345*dM*6 Convert donor identifier to GRID format: 1. Change any lower case alpha characters to upper case AB-12345*DM*6 2. Eliminate symbols/punctuation marks AB12345DM6 3. Pad with leading zeros to total 15 characters AB DM6 4. Add the ION in front of the identifier THE GRID would be: AB DM6

17 Question 6 Which of the following existing identifiers may be used/embedded in the GRID? a. Ab-12345*dM*6 b. AB12345DM6

18 Two Formats for GRID Presentation 1) Eye-Readable Format REQUIRED 2) Machine-Readable (bar-coded) Format OPTIONAL In both formats, the 19 characters are grouped/spaced much like a credit card (4, 4, 4, 4, 3)

19 Question 7 The eye-readable GRID includes which of the following: a. 4-digit ION b. 15-character Donor Identifier c. Emojis d. Spaces (4, 4, 4, 4, 3) much like a credit card e. A, B, and D

20 Global GRID Project milestones achieved so far WMDA and ICCBBA established GRID structure, phased implementation plan, and guidance documents IONs issued to all organizations listing on BMDW WMDA launched GRID Task Force Group Created WMDA Guide to Understanding and Preparing for GRID Implementation, a webinar for IOs, and specific guidance for cord blood banks-- all located on WMDA Share site Fields for GRID created in EMDIS and BMDW Phases 1 and 2 of implementation plan completed

21 Modifications to the project In order to ease the implementation burden, some items have been modified from the original scope of the effort: Elimination of GRID for Cord Blood instead comprehensive utilization of ISBT 128 will be encouraged Elimination of GRID for Life which would have allowed a GRID to follow a donor when transferring between registries Incorporating the check digit into the ID to reduce the risk of confusion or check digit loss

22 The Phases of GRID Implementation Phase Activities Timeline Phase 1 Registration identifier allocation rules, GRID format, GRID eye readable presentation, and GRID data structure for data transfers are defined. Guidance for registries to map local identifiers to the GRID is defined. Completed* Phase 2 Phase 3 The European Marrow Donor Information System (EMDIS) and Bone Marrow Donors Worldwide (BMDW) support the GRID. (a) GRID is a mandatory field in communication with EMDIS and BMDW. It is introduced as an optional field in communications between registries and their donor centers. (b) GRID is used as the key donor identifier on search reports and is integrated in forms for donor request and outcome reporting. GRID is used on labels of products from adult donors when a donor identifier is required. Completed TBD: ~2018** TBD * GRID documentation and guidance is being updated to reflect reduced / modified scope ** Timeline will be re-baselined following the update and approval of the adjusted scope

23 Question 8 By 2020, all Issuing Organizations throughout the world must identify their adult donors using GRID during the search process. a. True b. False

24 Next Steps for the Project WMDA GRID Task Force currently working on Phase 3: Develop detailed guidance for IOs to manage the transition to GRID Work with IOs to develop their implementation plans and start to communicate this at a local level (refer to Webinar, etc) Rally IOs to raise awareness of the needs and impact of GRID implementation with their key partners and stakeholders (TC, AC, CC, DC, labs) For more information, visit WMDA Share GRID page

25 Global GRID Project Summary Through a three-phased implementation process, the GRID project will essentially move issuing organizations FROM: Use of disparate formats and methodologies to assign donor identifiers that do not assure global uniqueness; TO: A standard, consistent system that assigns a globally unique identifier to potential HPC donors. GRID will reduce the risk of misidentification of donors or their donations due to the lack of global uniqueness of identifiers GRID will eliminate the possibility of two donors having the same identifier across the global network on BMDW

26 GRID Resources ICCBBA Website ( Implementation Guide: Global Registration Identifier for Donors [Data Structure 037] (IG-038) Implementation Guide: Global Registration Identifier for Donors, Issuing Organization Number (IG-039) GRID Issuing Organization Database Webinar: CT Software Changes for GRID ISBT 128 Standard Technical Specification (ST-001) WMDA Website Webinar: Planning and Preparing for GRID Implementation: Points of Consideration for Issuing Organizations Global Registration Identifier for Donors (GRID): WMDA Guide to Understanding and Preparing for GRID Implementation GRID Implementation Plan TEMPLATE Suggested Examples for Mapping Local Identifiers

27 How Will GRID Impact My Organization? What are the Important Questions? For your organization, consider: 1. What do we need to do to receive, record or report the GRID, both manually and electronically? 2. What software/equipment, processes and documents need to change within our organization? 3. How will we map the new GRIDs to the old IDs for traceability? 4. What are the obstacles? 5. Who in my organization needs to know about this?

28 CALL TO ACTION Go back and inform / share GRID resources with the right people in your organization, including but not limited to: Sr Leadership IT Finance/Administration Education & Training Questions? Contact GRIDinfo@nmdp.org for repository of FAQ

29 Thank you for your time!