Detailed Information on the
National Bone Marrow Donor Registry Assessment

Determine the best approach to collect data on: (1) outcomes for related donor transplants (while continuing to collect data on unrelated donor transplants), and (2) other uses of blood stem cells as required under P.L. 109-129.

Implementing Related Cord Blood Donor Demonstration Project as required under P.L. 109-129.

Maintain program funding in order to continue the NBMDR program's efforts to double the number of transplants by 2010, and continue to increase both their recruitment and number of donors on the Registry.

Continue to work towards the goal of tying together the program's budget requests to their annual and long-term performance goals.

Update and implement a Comprehensive Plan to Increase Transplants to support the long-term goal of increasing the annual number of transplants facilitated by the Registry.

Work on a methodology for determining one-year patient survival rates and establish baselines and targets for this performance measure.

Implement plan to establish the C.B. Bill Young Cell Transplantation Program as the successor to the National Bone Marrow Donor Registry.

Facilitate discussions among key stakeholders too ensure patients and physicians have timely access to all available blood stem cell sources (including cord blood units collected outside the scope of the National Cord Blood Inventory).

Measure: Increase the number of blood stem cell transplants facilitated annually by the Program

Explanation:The program will help to increase the number of unrelated and related donors receiving blood stem cell transplants.

Measure: Increase the number of cord blood units listed for transplantation by the Program

Explanation:By increasing the number of cord blood stem cell units in the Registry more individuals can receive transplants with a less perfect match, as cord blood stem cells are highly adaptable to the immune system of the person receiving the transplant.

Measure: Increase the number of blood stem cell transplants facilitated annually by the Program for minority patients

Explanation:Minority populations are less likely to find an exact donor match. The program has increased efforts to recruit minority donors to help ensure an increase in transplants facilitated for minority populations.

Measure: Increase the number of adult volunteer potential donors of minority race/ethnicity

Explanation:Minority populations are less likely to find an exact donor match. The program has increased efforts to recruit minority donors to help ensure an increase in transplants facilitated for minority populations.

Measure: Decrease the unit cost of human leukocyte antigen (HLA)-typing of potential donors

Explanation:Tissue type testing is an essential component of the process. Reducing the cost will help to ensure more donors are able to be fully screened through tissue type testing.

Measure: Rate of increase of patient survival one year, post-transplant

Explanation:By facilitating transplants, the program has a direct impact on improved chances of extended life. Data and methodologies are being examined to develop a baseline and target.

Is the program purpose clear?

Explanation: By statute, the program purpose is clear. The statute directs the Secretary, by contract, to establish and maintain a National Bone Marrow Donor Registry (Registry) to increase the number of transplant recipients (those with blood disorders such as Leukemia, and certain immune system and genetic disorders) suitably matched to biologically unrelated bone marrow donors. Activities to facilitate transplants consist of: establishing a system to find and recruit marrow donors, achieving comparability of access across racial/ethnic populations, ensuring potential donors are trained and educated, providing case management services to potential donors, and establishing and maintaining a scientific registry on recipients of transplants.

Evidence: Evidence 1. Registry is authorized under Section 379 of the Public Health Service Act (42 USC 274k-274m) 2. Health Resources and Services Administration (HRSA) contract with the National Marrow Donor Program (Sections B and C) Background Bone marrow is a spongy tissue found between bones. It is a source of blood stem cells. Since the Registry's inception in 1987, science determined that blood stem cells may be drawn also from peripheral (circulating) blood and umbilical cord blood. Congress recognized the new science in its FY 2001 Congress Report language, "The conferees ... support expansion of the National Marrow Donor Program's cord blood bank initiative, which provides another major source of donors for patients, particularly minority patients, in need of a marrow or blood stem cell transplant." Although the statute does not specifically reference "other sources" besides bone marrow, the NMDP factored this new knowledge into the efforts of the Registry in 1997 and 1999 respectively and contributed resources in FY 2001. Heretofore, references to "transplants" or 'blood stem cell transplants' refer to transplants of all three sources of blood stem cells.

Does the program address a specific and existing problem, interest or need?

Explanation: Based on the program's purpose and intent, the National Bone Marrow Donor Registry Program addresses an existing problem or need. With the changes in science, the number of individuals who could benefit from a transplant is growing as less physically taxing protocols extend this therapy to sicker and older patients. In addition, over the years minority populations tend to have more difficulty locating a donor match.

Evidence: Evidence 1. 2001 Biennial Report of the National Bone Marrow Donor Registry (August 2002) - Section 1.3.1 2. National Marrow Donor Program Registry Statistics Report (March 31, 2004) Background Annually, more than 30,000 individuals are diagnosed with a life threatening blood, immune system, or genetic disorder that is potentially curable with a transplant. Approximately 18,500 transplants have occurred since the Registry's inception in 1987. The number of individuals who could benefit from a transplant is growing as less physically taxing protocols extend this therapy to sicker and older patients. In 2003, more than 10,300 and 6,700 individuals conducted preliminary and formal searches, respectively. Unrelated donors are the focus of donor recruitment efforts due to the precision needed for a successful tissue (HLA) match and since there is increased probability that a relative may be predisposed to the same life threatening disease (70 percent of patients lack a related donor match). Also, since it is increasingly likely that a newly recruited volunteer will have the same tissue typing as an existing Registry donor and patients are more likely to find a matching donor within their own racial or ethnic group, the Registry has intensified its minority recruitment. Yet, some racial and ethnic groups are underrepresented on the Registry -- primarily African Americans and Hispanics, which represent roughly 7.9 and 7.6 percent respectively of those donors on the Registry. Approximately 800 African Americans and more than 900 Hispanics received transplants since the inception of the program, while more than 15,000 Whites received transplants. Peripheral blood stem cells help reduce the prevalence of graft failure/patient relapse. Umbilical cord blood stem cells are more adaptive to the immune system of the patient.

Is the program designed so that it is not redundant or duplicative of any other Federal, state, local or private effort?

Explanation: The Registry does not excessively overlap with other Federal programs. The Registry was initially created to unite several small local efforts to develop a national program. It was previously administered and funded within the National Institutes of Health's National Heart, Lung, and Blood Institute from FY 1990-1994, before it was moved to HRSA. Funded at approximately $23M/year, it is the largest U.S. listing of adult volunteers to donate blood stem cells to unrelated, tissue-matched patients (total HRSA funding of $186 million from FY 1995-2004). The Registry lists 5.3 million donors, while the Caitlin Raymond International Registry and the American Bone Marrow Donor Registry list combined volunteers of 80,000 donors. Also, some domestic cord blood banks supply cord blood units, but do not facilitate adult blood stem cell transplants. The Registry's efforts regarding tissue typing focuses on minority patients only. Currently funded at approximately $20M/year, the Navy, at Congressional direction, provided initial funds to establish the Registry (under a cooperative agreement) and continues to support HLA tissue typing and projects to increase efficiency in the search and transplant process. The Navy's research is directed at reducing the cost of tissue typing. The Registry could prove important in the event military personnel/civilians are part of a radiation emergency (total Office of Naval Research funding of $275 million from FY 1990-2004).

Evidence: Evidence 1. 2001 Biennial Report of the National Bone Marrow Donor Registry (August 2002) - Section 1.3.2 2. HRSA Cooperative Agreement with the Department of the Navy

Is the program design free of major flaws that would limit the program's effectiveness or efficiency?

Explanation: There is no strong evidence that greater efficiency or effectiveness could occur using some other funding mechanism. Competitive and formula grants to states could result in a fragmented system that may not lend itself to the rapid exchange of data, consistent monitoring and evaluation, or serving those most in need of a transplant. Local level grants would likely add to the lack of consistency. The NMDP is a network that coordinates blood stem cell transplants by managing a network of affiliated organizations, including: 155 transplant centers, 89 donor centers, 13 cord blood banks, and 22 laboratories.

Evidence: Evidence 2001 Biennial Report of the National Bone Marrow Donor Registry (August 2002)

Is the program effectively targeted, so that resources will reach intended beneficiaries and/or otherwise address the program's purpose directly?

Explanation: Based on the purpose of the program, the intended beneficiary population is patients who need unrelated donor transplants and, to a small extent, patients who will need an unrelated transplant if their present therapy or search for a related donor are unsuccessful. Data indicate that the program is, however, underutilized due to challenges such as a lack of suitable HLA matches, late or non-referral of patients, insurance and financial barriers. The Registry contains 5.3 million potential adult donors and 31,000 umbilical cord blood units. Fifteen percent of patients and 15 percent of donors are from another country. Seventy percent of all potential donors and 90 percent of minority donors have undergone complete tissue typing. Caucasian tissue matching is high, but less so among minorities. As a result, minority recruitment efforts have increased, which has lead to increased minority donors. At the same time the program faces challenges. In 2003, more than 6,700 formal searches were initiated; 2,310 transplants were facilitated. Also, the median number of days from the start of a formal search to transplant in 2003 was about 90 days.

Evidence: Evidence 1. 2001 Biennial Report of the National Bone Marrow Donor Registry (August 2002) - Section 1.3 2. National Marrow Donor Program Registry Statistics Report (March 31, 2004) 3. Comprehensive Plan to Increase Transplants (Section I) Background of Step-by-Step Search Process 1. Physician contacts NMDP and initiates search on behalf of patient 2. NMDP takes patient information (name, age, sex, race/ethnic group, disease diagnosis/status, and HLA type) and searches for an HLA match 3. NMDP reports search results to transplant physician by next business day 4. If match, NMDP provides anonymous results to physician. If patient decides to proceed, then formal search begins and costs of search are billed to patient's transplant center 5. If work-up determines donor is fit to donate, then donor signs an Intent to Donate form 6. Collection of the donor's blood stem cells is scheduled and transport arranged 7. Transplant occurs 8. Donor contacted for post-collection complications until reports resumption of normal activity. Recipient monitored regularly for post-transplant results and NMDP issues follow-up reports at 100 days, 6 months, and annually

Does the program have a limited number of specific long-term performance measures that focus on outcomes and meaningfully reflect the purpose of the program?

Explanation: The program developed new long-term output measures. In addition, for the FY 2006 PART, the program established a health outcomes performance measure. The measure addresses the one-year, post-transplant survival rates of recipients.

Evidence: See "Measures" Tab

Does the program have ambitious targets and timeframes for its long-term measures?

Explanation: The program has established ambitious targets and timeframes for the long-term performance measures for the Registry. The targets and timeframes are to: increase the number of blood stem cell transplants facilitated annually by the Registry by 95% between 2003 and 2010 and increase the number of blood stem cell transplants facilitated annually by the Registry, for minority patients, by 100% between 2003 and 2010. These targets are ambitious because the field is evolving rapidly and the demand for unrelated donor (URD) transplants could be sharply reduced by the success of ongoing research into: 1) drugs tailored to combat individual diseases that now are reasons for URD Transplants, 2) the use of half-matched relatives as donors and 3) cord blood transplants for adult patients. The targets also are ambitious because reaching them requires an average annual rate of increase that has been achieved in only 2 of the last 6 years.

Evidence: See "Measures" Tab

Does the program have a limited number of specific annual performance measures that can demonstrate progress toward achieving the program's long-term goals?

Explanation: For the FY 2006 PART, the program developed an efficiency goal that measures the annual cost of tissue typing. The program hopes to reduce the cost of these procedures. The program also developed new annual measures focused which contribute to achieving the newly developed long-term goals.

Evidence: See "Measures" Tab

Does the program have baselines and ambitious targets for its annual measures?

Explanation: Baselines and ambitious targets have been established for annual performance measures that support the two long-term output measures for the Registry.

Evidence: See "Measures" Tab

Do all partners (including grantees, sub-grantees, contractors, cost-sharing partners, and other government partners) commit to and work toward the annual and/or long-term goals of the program?

Explanation: The Registry is managed by a contract with the National Marrow Donor Program (NMDP). This cost-reimbursement contract ensures that the NMDP supports the overall goals and measures its progress toward accomplishing the goals. The NMDP contract contains annual performance measures in seven areas that link to the overall purpose of the program, including: the number of donors recruited, the number of transplants facilitated, donor search completion times, and donor availability. Also, the Navy's efforts on tissue typing help the program to achieve its goals.

Evidence: Evidence 1. HRSA contract with the National Marrow Donor Program (Sections B and C) 2. HRSA cooperative agreement with the Department of the Navy

Are independent evaluations of sufficient scope and quality conducted on a regular basis or as needed to support program improvements and evaluate effectiveness and relevance to the problem, interest, or need?

Explanation: Independent evaluations of the Registry have been conducted periodically by the GAO and the HHS Office of the Inspector General. The scope of these evaluations cover all major purposes and activities of the Registry, from donor recruitment and retention to the structure and financing of local recruitment efforts and the cost of searching the Registry. For the most part, the evaluations address the Registry's effectiveness and provide recommendations for improvement. In addition, the Registry also conducts Patient Satisfaction Surveys to ensure meeting donors' and recipients' needs.

Evidence: Evidence 1. GAO - Bone Marrow Transplants: Despite Recruitment Successes, National Program Maybe Underutilized (October 2002) 2. GAO - Bone Marrow Transplants: National Program Has Greatly Increased Pool of Potential Donors (November 1992) 3. HHS OIG ' National Marrow Donor Program: Financing Donor Centers (December 1996) 4. HHS OIG ' National Marrow Donor Program: Progress in Minority Recruitment (December 1996) 5. HHS OIG ' National Marrow Donor Program: Effectiveness in Retaining Donors (December 1996) 6. HHS OIG ' National Marrow Donor Program: Geographic Overlap Among Donor Centers (December 1996) 7. HRSA ' A Patient Satisfaction Survey (last updated February 2003)

Are Budget requests explicitly tied to accomplishment of the annual and long-term performance goals, and are the resource needs presented in a complete and transparent manner in the program's budget?

Explanation: The program does not provide a presentation that makes clear the impact of funding, policy or legislative decisions on expected performance nor does it explain why a particular funding level/performance result is the most appropriate.

Evidence: Evidence DHHS Federal Fiscal Year Justification of Estimates for Appropriations Committees

Has the program taken meaningful steps to correct its strategic planning deficiencies?

Explanation: To date, HHS/HRSA has not tied its budget requests to the accomplishments of the annual and long-term performance goals. HHS does plan to submit a performance-based budget beginning in FY 2006, but is it unclear whether this budget will show the marginal impact of funding decisions.

Evidence:  

Does the agency regularly collect timely and credible performance information, including information from key program partners, and use it to manage the program and improve performance?

Explanation: The program regularly collects performance data from the Registry and uses these data to inform program management. Since its inception in 1987, the Registry has been administered by the nonprofit National Marrow Donor Program (NMDP) headquartered in Minneapolis, MN. The NMDP contract requires submission of detailed plans and reports with a schedule of deliverables. The program uses the status of those deliverables to determine priorities and ensure efforts and resources are expended in line with the resources. The program also receives quarterly reports on the Registry's performance against the seven standards.

Evidence: Evidence 2001 Biennial Report on the National Bone Marrow Donor Registry (August 2002) - Section 1.2.6 NMDP Contract data reports 1. Registry Performance Standards (Task 15) 2. Monthly Statistical Reports (Section C12e) 3. Transplant Center-specific Survival Rates (Section C12g) 4. Analysis of the Optimal Donor Registry Size (Section C12h)

Are Federal managers and program partners (including grantees, sub-grantees, contractors, cost-sharing partners, and other government partners) held accountable for cost, schedule and performance results?

Explanation: Program staff are held accountable during annual performance appraisals, which contain elements relating to program oversight and the most critical elements of program performance. NMDP is also held accountable for performance, efficiency and timeliness. Inadequate contract performance may lead to HRSA not extending the contract and re-competing it for a more accountable entity. Past performance is given a heavy weight in the competitive selection of the contractor; poor performance could result in loss of the contract. Since the Registry is its only focus, NMDP has strong incentive to perform well. NMDP participates in HRSA-sponsored public meetings at the request of the Project Officer (PO), attends bi-monthly meetings with the PO to discuss Registry progress and issues, and has quarterly written progress reports address accomplishments and/or challenges since the last report and other topics.

Evidence: Evidence Employee Performance Management System ' Work Plan and Summary Rating NMDP Contract tasks 1. Comprehensive Plan to Increase Transplants (Section C12j) 2. 2001 Biennial Report of the National Bone Marrow Donor Registry (August 2002) - Section C12i 3. Participate in HRSA-Sponsored Meeting (Task 13) 4. Attend PO Meetings and Submit Routine Report (Task 14)

Are funds (Federal and partners') obligated in a timely manner and spent for the intended purpose?

Explanation: Funding for the Registry is obligated in a timely manner and spent for the intended purpose. Early each fiscal year, the program prepares forecast expenditures from the appropriation. The program receives monthly Status of Funds Reports from HRSA financial staff and uses them to compare budgeted and actual obligations and expenditures. The PO receives detailed vouchers from the NDMP and compares them against the contract budget and the expected monthly cash flows. Erroneous claims have been rare, minor and quickly resolved without the need for recourse. There have been no instances of unexpended Federal funds at the end of contracts periods. In addition, Deloitte & Touche conducted its annual audit of NMDP and identified no material weaknesses or reportable conditions in financial statements and internal control of federal award.

Evidence: Evidence 1. National Marrow Donor Program Monthly Contract Voucher (March 2004) 2. Deloitte & Touche - National Marrow Donor Program: Schedule of Expenditures of Federal Awards for the Year Ended September 30, 2003 and Independent Auditors' Report (February 3, 2004) 3. HRSA's DOT - Operating Plans (March 18, 2004) 4. HRSA's DOT - Status of Funds (March 31, 2004)

Does the program have procedures (e.g. competitive sourcing/cost comparisons, IT improvements, appropriate incentives) to measure and achieve efficiencies and cost effectiveness in program execution?

Explanation: The program awards its contract for the Registry through a competitive process and solicits competition through Sources Sought announcements. The NMDP, awards its subcontracts for HLA typing, infectious disease typing, operation of tissue sample repositories, research projects, and IT through a competitive request for proposals. NMDP also subcontracts with a network of donor centers, collection centers, cord blood banks, and others. Also, the NMDP has worked continually to improve its IT systems to improve workflow, increase accuracy of data and reduce reliance on data submission by fax and/or paper. At HRSA's direction, NMDP is evaluating the advantages of consolidating all local donor files into a centralized national database, to determine if it would increase efficiency and speed of the donor search and better protect the donor data base against loss due to error or a local disaster. In addition, the contract requires NMDP to develop a plan to Increase the Efficiency of the Network, and to report annually on progress in implementing the plan. Also, HRSA's Maternal and Child Health (MCH) Bureau is in the process of implementing a web-based grant application system.

Evidence: Evidence 1. HRSA - Sources Sought Notice (January 31, 2002) 2. HRSA contract with the National Marrow Donor Program 3. Beginning in September 2004, all MCH Bureau applications will be web-based Background The STAR (Search, Tracking and Registry) proprietary computer software system is the main tool for managing the Registry. It contains four parts: 1) STAR Link - links NMDP coordinating center with donor centers, 2) TRANS Link - links donor searches with transplant forms, 3) CRIS Link - links NMDP repositories, laboratories, and the NMDP coordinating center, and 4) CORD Link - links cord blood banks and the NMDP coordinating center. Data Five nights a week, STAR performs more than 10 billion HLA type comparison transactions to update each patient's search.

Does the program collaborate and coordinate effectively with related programs?

Explanation: The program works closely with the Navy, which funds aspects of the Registry, to provide consistent policy direction. HRSA and the Navy marrow program director communicate at least once a week on program issues, and the Navy participates in all HRSA Project Officer meetings with the NMDP, and in review of certain contract deliverables. Program staff submit proposed international membership agreements with donor centers, transplant centers, etc. to the State Department for review of any foreign implications. Also, the program formed and chairs a stem cell interagency workgroup (CDC, FDA, CMS, NIH, VA, Navy, and HRSA), which meets 4-6 times a year to discuss and resolve each agency's issues affecting stem cell transplantation.

Evidence:  

Does the program use strong financial management practices?

Explanation: In FY 2003, HHS OIG conducted an HHS financial statement audit. The audit reported that the Department had serious internal control weaknesses in its financial systems and processes for producing financial statements. OIG considered this weakness to be material. The audit recommended that HHS improve their reconciliations, financial analysis, and other key controls. The September 30, 2002 HRSA independent auditor's report found that the preparation and analysis of financial statements was manually intensive and consumed resources that could be spent on analysis and research of unusual accounting. The audit also found that HRSA's interagency grant funding agreement transactions were recorded manually and were inconsistent with other agencies' procedures. Finally, the audit found that HRSA had not developed a disaster recovery and security plan for its data centers.

Evidence: Evidence 1. HRSA - Annual Report (FY 2002) 2. HHS Performance and Accountability Report (FY 2003)

Has the program taken meaningful steps to address its management deficiencies?

Explanation: HHS' long-term strategic plan is to resolve the internal control weaknesses is to replace existing accounting systems and other financial systems within HHS with the Unified Financial Management System (UFMS). HHS plans to fully implement the UFMS Department-wide by 2007. HRSA developed a corrective action plan to address the reportable conditions identified in the September 30, 2002 independent auditor's report. For each aspect of the five reportable conditions, HRSA assigned an office responsibility. The plan also outlines milestones and target completion dates. The program contracted with Deloitte & Touche to audit the National Marrow Donor Program for FY 2003. The audit considered the NMDP's internal control over financial reporting. Deloitte and Touche's opinion is the NMDP complied, in all material respects, "with the requirements of laws, regulations, contracts, and grants". Deloitte & Touche also noted "no matters involving the internal control over compliance and its operation that [it] consider[s] to be material weaknesses".

Evidence: Evidence 1. Deloitte & Touche - National Marrow Donor Program Schedule of Expenditures of Federal Awards for the Year Ended September 30, 2003 and Independent Auditors' Reports (FY 2003) 2. HRSA's Corrective Action Plan for FY 2002

Are grants awarded based on a clear competitive process that includes a qualified assessment of merit?

Explanation: The program awards a contract for the Registry through a competitive process that reviews past performance and assesses all applicants overall merit. The technical review process gives substantial weight to relevant experience and past performance, in the case of the current contractor.

Evidence: Evidence 1. HRSA contract with the National Marrow Donor Program 2. Sources Sought Notice

Does the program have oversight practices that provide sufficient knowledge of grantee activities?

Explanation: The program has oversight practices in place that provide detailed knowledge of contractor activities, including: HRSA is an ex-officio member of the NMDP Board of Directors, Executive Committee and all 14 other standing committees; staff conduct site visits to the contractor's offices; and staff receive quarterly progress reports, monthly registry statistics and several contract deliverables.

Evidence: Evidence HRSA contract with the National Marrow Donor Program

Does the program collect grantee performance data on an annual basis and make it available to the public in a transparent and meaningful manner?

Explanation: A variety of performance data are collected by NMDP and is made available to the public in a transparent, meaningful and widely available manner. HRSA publishes a Biennial Report of the National Bone Marrow Donor Registry. Data on survival rates of each member transplant center in the U.S. are published annually in the transplant center directory for patients, which is available to the public in print and on-line.

Evidence: Evidence1. 2001 Biennial Report on the National Bone Marrow Donor Registry (August 2002)2. Choosing a Transplant Center: A Patients Guide (2003-04 Edition)3. www.marrow.org/PATIENT/patients_guide_idx.html

Has the program demonstrated adequate progress in achieving its long-term performance goals?

Explanation: There has been progress made toward achieving some of the newly developed long-term goals. Progress ranges from a ten percent growth in transplants from 2000 to 2001, to a 21 percent growth from 2002 to 2003. The ambitious long-term goal is to nearly double the number of transplants by 2010.

Evidence: See Questions 2.1-2.2

Does the program (including program partners) achieve its annual performance goals?

Explanation: The program has been very successful at increasing recruitment and the number of donors on the Registry. This is also highlighted by the GAO in its 2002 report. Between 1989 and 1992 nearly 500,000 donors were added. The 2003 baseline reflects more than 5 million individuals are on the Registry.

Evidence: See Questions 2.3-2.4

Does the program demonstrate improved efficiencies or cost effectiveness in achieving program goals each year?

Explanation: The cost of tissue typing per person has decreased each year from $79.39 in 2000 to $65.00 in 2003. The program's efficiency measure proposes to reduce the cost to $56.42 by 2010. In addition, during the period (FY 1999-2003) in which funding for the program increased 21 percent, the annual number of transplants facilitated increased by nearly 50 percent.

Evidence:  

Does the performance of this program compare favorably to other programs, including government, private, etc., with similar purpose and goals?

Explanation: No other programs compare to the National Bone Marrow Donor Registry Program. The authorizing legislation laid out the Federal government's role in establishing and maintaining a National Bone Marrow Donor Registry to increase the number of transplant recipients suitably matched to biologically unrelated bone marrow donors. By statute, no other Federal, state, local government maintains a similar database. There are other private organizations that are engaged in similar activities. However, many of these organizations focus on a narrow portion of the population or do not coordinate on a national basis.

Evidence:  

Do independent evaluations of sufficient scope and quality indicate that the program is effective and achieving results?

Explanation: The most recent independent evaluation is a 2002 GAO report that addresses the extent the program's recruitment efforts increased donor enrollment, the extent to which the Registry is utilized to search for and obtain transplants, and whether the donor centers and other organizations are complying with its standards and procedures. The report found that the recruitment efforts have increased enrollment, the network generally adheres to the NMDP's standards and procedures, but that the Registry may be underutilized for both searching and facilitating transplants. Only about one-tenth of those estimated to need unrelated donor transplants are facilitated by NMDP. The 1992 GAO report found that NMDP helped to increase its Registry with the use of resources for tissue typing. The Registry grew from about 73,000 donors in 1989 to nearly 561,000 donors in 1992. These two reports and a series of four HHS OIG reports in 1996 examined many aspects of the program and did not recommend program design changes.

Evidence: Evidence 1. GAO - Bone Marrow Transplants: Despite Recruitment Successes, National Program May be Underutilized (October 2002) 2. GAO - Bone Marrow Transplants: National Program Has Greatly Increased Pool of Potential Donors (November 1992) 3. HHS OIG ' National Marrow Donor Program: Financing Donor Centers (December 1996) 4. HHS OIG ' National Marrow Donor Program: Progress in Minority Recruitment (December 1996) 5. HHS OIG ' National Marrow Donor Program: Effectiveness in Retaining Donors (December 1996) 6. HHS OIG ' National Marrow Donor Program: Geographic Overlap Among Donor Centers (December 1996)