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Belinson S, Mauger Rothenberg B, Chopra R, et al. Future Research Needs for Hematopoietic Stem-Cell Transplantation in the Pediatric Population: Identification of Future Research Needs From Comparative Effectiveness Review No. 48 [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2012 Feb. (Future Research Needs Papers, No. 10.)

Cover of Future Research Needs for Hematopoietic Stem-Cell Transplantation in the Pediatric Population

Future Research Needs for Hematopoietic Stem-Cell Transplantation in the Pediatric Population: Identification of Future Research Needs From Comparative Effectiveness Review No. 48 [Internet].

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Appendix HResearch Gap Rankings

Appendix Table H1Initial research gap rankings (five KI members)

Gap:Ranking # (Total Points of 35):
Long term consequences of HSCT, measured by overall survival, functional measures, quality of life, and adverse effects3 (25/35)
Mitigation of long term effects by changes in regimen and changes in subsequent medical or psychosocial intervention1 (30/35)
Role of novel approaches to HSCT in altering short-term adverse effects such approaches include: reduced intensity approaches, novel cellular therapies (such as natural killer-cell therapy) and immunomodulatory therapies (including vaccine therapy)2 (26/35)
Multicenter collaboration to increase accrual of patient and systematizing outcome reporting5 (15/35)
Effectiveness of survivorship planning on long-term, comprehensive followup6 (14/35)
Impact on outcomes of a ‘family-centered’ approach to transplantation (Advocates of children who have undergone HSCT transplantation defined such an approach as including: emotional and psychosocial counseling for the family with a special attention on donor and non-donor siblings, information to share with caregivers and peers, and tools rather than only a large amount of information for navigating the complexities of the medical system and medication management)4 (17/35)
Uniform reporting of outcome data to allow patient comparison of HSCT outcomes by transplant center7 (13/35)

Appendix Table H2Final list of research gap rank (from eight KI members)

Gap:Ranking # (Total Points of 56):
Long term consequences of HSCT, measured by overall survival, functional measures, quality of life, and adverse effects1 (41/56)
Mitigation of long term effects by changes in regimen and changes in subsequent medical or psychosocial intervention1 (41/56)
Role of novel approaches to HSCT in altering short-term adverse effects such approaches include: reduced intensity approaches, novel cellular therapies (such as natural killer-cell therapy) and immunomodulatory therapies (including vaccine therapy)2 (34/56)
Multicenter collaboration to increase accrual of patient and systematizing outcome reporting3 (31/56)
Effectiveness of survivorship planning on long term, comprehensive followup4 (24/56)
Impact on outcomes of a ‘family-centered’ approach to transplantation (Advocates of children who have undergone HSCT transplantation defined such an approach as including: emotional and psychosocial counseling for the family with a special attention on donor and non-donor siblings, information to share with caregivers and peers, and tools rather than only a large amount of information for navigating the complexities of the medical system and medication management)3 (31/56)
Uniform reporting of outcome data to allow patient comparison of HSCT outcomes by transplant center5 (22/56)
Bookshelf ID: NBK84473

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