Table 3. Expert Ratings of Agreement With 4 Dimensions for Each of 20 Potential Solutions.
| Solution | Respondents, No. (%) | ||||
|---|---|---|---|---|---|
| Strongly disagree | Disagree | Unsure | Agree | Strongly agree | |
| Domain 1.0: Revise and improve timeliness of RUSP review | |||||
| 1.1 Greatly expand funding for ACHDNC | |||||
| Efficacious | 1 (2.5) | 3 (7.5) | 3 (7.5) | 18 (45.0) | 15 (37.5) |
| Acceptable | 1 (2.5) | 3 (7.5) | 4 (10.0) | 18 (45.0) | 14 (35.0) |
| Feasible | 2 (5.0) | 3 (7.5) | 18 (45.0) | 8 (20.0) | 9 (22.5) |
| Sustainable | 3 (7.5) | 7 (17.5) | 14 (35.0) | 10 (25.0) | 6 (15.0) |
| 1.2 Support advocates to prepare nominations | |||||
| Efficacious | 1 (2.5) | 6 (15.0) | 8 (20.0) | 17 (42.5) | 8 (20.0) |
| Acceptable | 1 (2.5) | 3 (7.5) | 4 (10.0) | 23 (57.5) | 9 (22.5) |
| Feasible | 0 | 4 (10.0) | 4 (10.0) | 26 (65.0) | 6 (15.0) |
| Sustainable | 0 | 8 (27.5) | 11 (27.5) | 14 (35.0) | 7 (17.5) |
| 1.3 Review bundles of disorders | |||||
| Efficacious | 2 (5.0) | 5 (12.5) | 3 (7.5) | 17 (42.5) | 13 (32.5) |
| Acceptable | 3 (7.5) | 7 (17.5) | 7 (17.5) | 16 (40.0) | 7 (17.5) |
| Feasible | 3 (7.5) | 6 (15.0) | 11 (27.5) | 11 (27.5) | 9 (22.5) |
| Sustainable | 2 (5.0) | 5 (12.5) | 10 (25.0) | 16 (40.0) | 7 (17.5) |
| 1.4 Expand net benefit considerations | |||||
| Efficacious | 1 (2.5) | 6 (15.0) | 6 (15.0) | 17 (42.5) | 10 (25.0) |
| Acceptable | 1 (2.5) | 6 (15.0) | 9 (22.5) | 17 (42.5) | 7 (17.5) |
| Feasible | 1 (2.5) | 5 (12.5) | 15 (37.5) | 13 (32.5) | 6 (15.0) |
| Sustainable | 1 (2.5) | 5 (12.5) | 17 (42.5) | 13 (32.5) | 4 (10.0) |
| Domain 2.0: create mechanisms to offer screening for conditions in addition to those on the RUSP | |||||
| 2.1 Establish a provisional RUSP | |||||
| Efficacious | 5 (12.5) | 7 (17.5) | 5 (12.5) | 14 (35.0) | 9 (22.5) |
| Acceptable | 8 (20.0) | 12 (30.0) | 6 (15.0) | 13 (32.5) | 1 (2.5) |
| Feasible | 5 (12.5) | 6 (15.0) | 10 (25.0) | 16 (40.0) | 3 (7.5) |
| Sustainable | 5 (12.5) | 8 (20.0) | 14 (35.0) | 10 (25.0) | 3 (7.5) |
| 2.2 Establish a voluntary RUSP | |||||
| Efficacious | 2 (5.0) | 6 (15.0) | 6 (15.0) | 17 (42.5) | 9 (22.5) |
| Acceptable | 2 (5.0) | 8 (20.0) | 6 (15.0) | 17 (42.5) | 7 (17.5) |
| Feasible | 4 (10.0) | 7 (17.5) | 12 (30.0) | 14 (35.0) | 3 (7.5) |
| Sustainable | 4 (10.0) | 7 (17.5) | 17 (42.5) | 10 (25.0) | 2 (5.0) |
| 2.3 Create public-private partnerships | |||||
| Efficacious | 0 | 0 | 8 (20.0) | 16 (40.0) | 16 (40.0) |
| Acceptable | 1 (2.5) | 0 | 9 (22.5) | 13 (32.5) | 17 (42.5) |
| Feasible | 1 (2.5) | 1 (2.5) | 8 (20.0) | 16 (40.0) | 14 (35.0) |
| Sustainable | 0 | 2 (5.0) | 14 (35.0) | 12 (30.0) | 12 (30.0) |
| Domain 3.0: accelerate and expand data collection to inform policy decisions and implementation | |||||
| 3.1 Align programs across federal agencies | |||||
| Efficacious | 0 | 5 (12.5) | 0 (0) | 10 (25.0) | 25 (62.5) |
| Acceptable | 0 | 3 (7.5) | 1 (2.5) | 14 (35.0) | 22 (55.0) |
| Feasible | 1 (2.5) | 4 (10.0) | 14 (35.0) | 13 (32.5) | 8 (20.0) |
| Sustainable | 0 | 3 (7.5) | 12 (30.0) | 13 (32.5) | 12 (30.0) |
| 3.2 Expand funding for research | |||||
| Efficacious | 0 | 2 (5.0) | 4 (10.0) | 21 (52.5) | 13 (32.5) |
| Acceptable | 0 | 1 (2.5) | 2 (5.0) | 22 (55.0) | 15 (37.5) |
| Feasible | 0 | 4 (10.0) | 9 (22.5) | 19 (47.5) | 8 (20.0) |
| Sustainable | 1 (2.5) | 6 (15.0) | 16 (40.0) | 12 (30.0) | 5 (12.5) |
| 3.3 Establish mechanisms for cross-state data coordination for provisional disorders | |||||
| Efficacious | 1 (2.5) | 0 | 1 (2.5) | 18 (45.0) | 20 (50.0) |
| Acceptable | 1 (2.5) | 3 (7.5) | 4 (10.0) | 17 (42.5) | 15 (37.5) |
| Feasible | 2 (5.0) | 6 (15.0) | 12 (30.0) | 11 (27.5) | 9 (22.5) |
| Sustainable | 1 (2.5) | 2 (5.0) | 15 (37.5) | 14 (35.0) | 8 (20.0) |
| 3.4 Establish a network of research centers | |||||
| Efficacious | 0 | 3 (7.5) | 6 (15.0) | 15 (37.5) | 16 (40.0) |
| Acceptable | 0 | 4 (10.0) | 5 (12.5) | 18 (45.0) | 13 (32.5) |
| Feasible | 0 | 5 (12.5) | 11 (27.5) | 14 (35.0) | 10 (25.0) |
| Sustainable | 0 | 5 (12.5) | 13 (32.5) | 14 (35.0) | 8 (20.0) |
| 3.5 Establish a national center for longitudinal follow-up | |||||
| Efficacious | 0 | 4 (10.0) | 3 (7.5) | 10 (25.0) | 23 (57.5) |
| Acceptable | 0 | 4 (10.0) | 3 (7.5) | 18 (45.0) | 15 (37.5) |
| Feasible | 0 | 5 (12.5) | 14 (35.0) | 12 (30.0) | 9 (22.5) |
| Sustainable | 0 | 6 (15.0) | 14 (35.0) | 13 (32.5) | 7 (17.5) |
| Domain 4.0: help states explore comprehensive implementation of newborn screening for new disorders | |||||
| 4.1 Expand state technical assistance | |||||
| Efficacious | 1 (2.5) | 2 (5.0) | 5 (12.5) | 14 (35.0) | 18 (45.0) |
| Acceptable | 1 (2.5) | 1 (2.5) | 6 (15.0) | 16 (40.0) | 16 (40.0) |
| Feasible | 2 (5.0) | 4 (10.0) | 11 (27.5) | 17 (42.5) | 6 (15.0) |
| Sustainable | 1 (2.5) | 5 (12.5) | 16 (40.0) | 12 (30.0) | 6 (15.0) |
| 4.2 Expand federal funding to states | |||||
| Efficacious | 1 (2.5) | 2 (5.0) | 3 (7.5) | 18 (45.0) | 16 (40.0) |
| Acceptable | 3 (7.5) | 4 (10.0) | 10 (25.0) | 10 (25.0) | 13 (32.5) |
| Feasible | 2 (5.0) | 5 (12.5) | 15 (37.5) | 11 (27.5) | 7 (17.5) |
| Sustainable | 2 (5.0) | 7 (17.5) | 16 (40.0) | 9 (22.5) | 6 (15.0) |
| 4.3 Create network of regional screening laboratories | |||||
| Efficacious | 1 (2.5) | 0 (0) | 3 (7.5) | 20 (50.0) | 16 (40.0) |
| Acceptable | 1 (2.5) | 4 (10.0) | 8 (20.0) | 16 (40.0) | 11 (27.5) |
| Feasible | 1 (2.5) | 3 (7.5) | 11 (27.5) | 15 (37.5) | 10 (25.0) |
| Sustainable | 1 (2.5) | 4 (10.0) | 12 (30.0) | 15 (37.5) | 8 (20.0) |
| 4.4 Create state or regional models for specialized treatment access | |||||
| Efficacious | 3 (7.5) | 2 (5.0) | 3 (7.5) | 12 (30.0) | 20 (50.0) |
| Acceptable | 1 (2.5) | 4 (10.0) | 4 (10.0) | 14 (35.0) | 17 (42.5) |
| Feasible | 2 (5.0) | 7 (17.5) | 10 (25.0) | 12 (30.0) | 9 (22.5) |
| Sustainable | 1 (2.5) | 7 (17.5) | 10 (25.0) | 12 (30.0) | 10 (25.0) |
| 4.5 Launch national public awareness campaign about benefits of NBS | |||||
| Efficacious | 0 | 7 (17.5) | 10 (25.0) | 7 (17.5) | 16 (40.0) |
| Acceptable | 0 | 3 (7.5) | 5 (12.5) | 11 (27.5) | 21 (52.5) |
| Feasible | 0 | 4 (10.0) | 8 (20.0) | 14 (35.0) | 14 (35.0) |
| Sustainable | 0 | 10 (25.0) | 14 (35.0) | 6 (15.0) | 10 (25.0) |
| Domain 5.0: evaluate emerging methods of screening and their consequences | |||||
| 5.1 Build national capacity to identify genetic variants and associated clinical database | |||||
| Efficacious | 1 (2.5) | 1 (2.5) | 4 (10.0) | 17 (42.5) | 17 (42.5) |
| Acceptable | 1 (2.5) | 1 (2.5) | 1 (2.5) | 18 (45.0) | 19 (47.5) |
| Feasible | 1 (2.5) | 3 (7.5) | 16 (40.0) | 14 (35.0) | 6 (15.0) |
| Sustainable | 1 (2.5) | 2 (5.0) | 16 (40.0) | 13 (32.5) | 8 (20.0) |
| 5.2 Launch coordinated research to evaluate genetic and genomic screening approaches | |||||
| Efficacious | 1 (2.5) | 1 (2.5) | 5 (12.5) | 19 (47.5) | 14 (35.0) |
| Acceptable | 0 | 2 (5.0) | 6 (15.0) | 21 (52.5) | 11 (27.5) |
| Feasible | 0 | 2 (5.0) | 11 (27.5) | 18 (45.0) | 9 (22.5) |
| Sustainable | 0 | 5 (12.5) | 16 (40.0) | 13 (32.5) | 6 (15.0) |
| 5.3 Conduct series of studies on long-term consequences of false positives and surveillance of screen-positive cases | |||||
| Efficacious | 2 (5.0) | 3 (7.5) | 1 (2.5) | 16 (40.0) | 18 (45.0) |
| Acceptable | 2 (5.0) | 1 (2.5) | 2 (5.0) | 21 (52.5) | 14 (35.0) |
| Feasible | 2 (5.0) | 5 (12.5) | 9 (22.5) | 13 (32.5) | 11 (27.5) |
| Sustainable | 2 (5.0) | 6 (15.0) | 17 (42.5) | 7 (17.5) | 8 (20.0) |
Abbreviations: ACHDNC, Advisory Committee on Heritable Disorders in Newborns and Children; NBS, newborn screening; RUSP, Recommended Uniform Screening Panel.