International NetCord Foundation Executive Committee Conference Call Minutes Committee Members: Board Members: Staff: President Joan Garcia and Drs. Yves Beguin and Elizabeth Shpall Drs. Cristina Navarrete and Paolo Rebulla Alan Leahigh, Holger Gressmann and Robert Krawisz The meeting was called to order by President Joan Garcia at 10:05 a.m. Central Daylight Time. I. APPROVAL OF MINUTES Approval of Minutes MOTION: (Shpall - Rebulla) Approve the minutes of the Executive Committee meeting on April 17, 2007. CARRIED II. WORLDWIDE CORD BLOOD REGISTRY Conference Report Distribution to Board Committee Chairs CONSENSUS: Accept the Conference Report of the May 10 meeting between representatives of NetCord and NMDP. CONSENSUS: Direct staff to distribute the Conference Report of the May 10 NetCord-NMDP meeting to members of the Board of Directors. CONSENSUS: Request Dr. Garcia to consider appointments of chairs for the joint NetCord-NMDP committees on Information Technology, Algorithm and Governance, and present his recommendations to the Executive Committee at its next meeting. III. PARTICIPATION OF CORD BLOOD REGISTRIES IN NETCORD Listing of Inventories Participation in Board Meetings Payment of Annual Fee CONSENSUS: Recommend to the Board of Directors that national and regional cord blood registries be invited to list their inventories with the NetCord Virtual Office. CONSENSUS: Recommend to the Board of Directors that each national and regional cord blood registry participating in the Virtual Office be allowed to send one non-voting representative for participation in meetings of the NetCord Board of Directors. CONSENSUS: Recommend to the Board of Directors that each national and regional cord blood registry participating in the Virtual Office must pay an annual fee based on the number of NetCord member banks in its registry.
NetCord Executive Committee Page Two Discussions with Registries CONSENSUS: In the interim until Board of Directors approval, authorize the President to begin discussions with national and regional registries about the possibility of listing their inventory with the NetCord Virtual Office. IV. FUND RAISING Invitation Letter Corporate Contacts Scientific Meetings CONSENSUS: Request Dr. Shpall and staff to provide to Dr. Rebulla comments and edits on the draft letter to potential corporate members. CONSENSUS: Request Executive Committee members to help seek corporate membership for companies with which they have existing relationships. Information about contacts at the companies should be sent to Bob Krawisz before the next Executive Committee meeting. CONSENSUS: Request Dr. Rebulla to submit recommendations to the Executive Committee on how to bring corporate members together periodically to discuss issues of common interest. V. POSITION STATEMENT ON AUTOLOGOUS BANKING Statement Amendments Approval of Statement CONSENSUS: Amend the draft position statement on cord blood for autologous use as follows: Revise the title, replacing the word Policy with Position Statement. In the last sentence of paragraph 3a., indicate that cord blood banks and processing facilities must seek and achieve FACT-NetCord or equivalent accreditation. In the last sentence of paragraph 3b., delete the word Potential. CONSENSUS: Recommend to the Board of Directors approval of the amended NetCord Position Statement on Banking of Cord Blood for Autologous Use. [Attachment] VI. EXTERNAL QUALITY ASSESSMENT SCHEME Proposal for Funding CONSENSUS: Request Dr. Navarrete to develop a proposal for an external quality assessment scheme that can be submitted to healthcare companies for funding. VII. SCHEDULE FOR MONTHLY CONFERENCE CALLS Day and Time CONSENSUS: Make Tuesday at 4:00 p.m. Central European Time the default time for Executive Committee conference calls.
NetCord Executive Committee Page Three VIII. INFORMATION REPORTS The following informational reports were received: Japan and AsiaCord Registries Conference Report Italian Registry Correspondence Virtual Office Mr. Gressmann Recruitment of Member Banks Mr. Krawisz Submitted by Bob Krawisz IX. ADJOURNMENT The meeting was adjourned at 12:00 noon Central Daylight Time.
ATTACHMENT DRAFT POSITION STATEMENT NETCORD POSITION STATEMENT ON BANKING OF CORD BLOOD FOR AUTOLOGOUS USE 1. Placental and umbilical cord blood stem cells have unique properties that make them useful in the treatment of certain blood diseases and immune disorders. 2. Cord blood stem cells may be collected and preserved in a bank for any of four reasons. a. The cells may be donated to a bank for potential allogeneic transplantation when there is an appropriate HLA match for a patient who has a life-threatening blood disease. This is a proven and increasingly common practice and has important social value. b. The cells may be collected and preserved for a relative, such as an older sibling, who has a rare blood disease treatable by transplant. This also is a proven medical practice. c. The cells may be collected and preserved on the speculation that the donor may himself or herself need them in the future for autologous hematopoietic stem cell transplantation as a treatment for malignant hematological diseases. The possibility that such malignancies will occur is very low. Under these rare circumstances, allogeneic (not autologous) stem cell transplantation is the standard care for most malignant hematological diseases. Moreover, there is a possibility that these autologous cells contain malignant cells that may cause disease relapse. d. The cells may be collected and preserved for possible future use to regenerate tissues. At present, there is no evidence that cord blood cells can be used therapeutically for this purpose. There are unique cell populations in cord blood that may have potential for regenerative medicine. However, it is not clear that those properties would be any more favorable than those in the patient s own peripheral blood or bone marrow. 3. Regardless of the reason for the collection and preservation of cord blood stem cells, two principles shall prevail. a. The process of collecting, processing, testing, banking, selection and release of cord blood stem cells must meet professionally recognized international standards, such as those developed by NetCord-FACT. Cord blood banks and processing facilities must seek and achieve FACT-NetCord or equivalent accreditation. b. The information given to an adult donor, or the parents or guardian of an infant or minor donor must be complete, unbiased and balanced. In particular, the informed consent process shall include the purpose of the stem cell collection, the possible benefits and risks, and the likelihood that the cells may be used for that particular purpose. Donors shall not be misled about the potential for cells to be used to treat future disease in that donor or to regenerate tissue. Conflicts of interest must be disclosed.
5. This policy will be reviewed periodically and updated when warranted by evidence-based clinical and laboratory research. Recommendation Since the therapeutic benefit of allogeneic cord blood transplantation has been convincingly demonstrated, NetCord primarily promotes banking for allogeneic stem cell transplantation. Under the conditions outlined in this NetCord Policy Statement, banking for autologous purposes may only be considered if such storage is part of a program that gives priority to the use of cord blood units for allogeneic stem cell transplantation.