Community counts: Evolution of a national surveillance system for bleeding disorders

TY - JOUR

T1 - Community counts

T2 - Evolution of a national surveillance system for bleeding disorders

AU - on behalf of the U.S. Haemophilia Treatment Center Network.

AU - Manco-Johnson, Marilyn J.

AU - Byams, Vanessa R.

AU - Recht, Michael

AU - Dudley, Becky

AU - Dupervil, Brandi

AU - Aschman, Diane J.

AU - Oakley, Meredith

AU - Kapica, Suzanne

AU - Voutsis, Mariam

AU - Humes, Steven

AU - Kulkarni, Roshni

AU - Grant, Althea M.

N1 - Funding Information: Community Counts is funded by the CDC through a cooperative agreement (DD001155) awarded to ATHN in partnership with the USHTCN. Additional support was supplied by the Maternal and Child Health Bureau, 340B program 2H30MC 24049. The authors would like to thank the USHTCN regional leadership, clinicians and staff for their efforts in the development and ongoing implementation of Community Counts, and especially the patients and families who contributed information comprising the database. The findings Funding Information: Community Counts is funded by the CDC through a cooperative agreement (DD001155) awarded to ATHN in partnership with the USHTCN. Additional support was supplied by the Maternal and Child Health Bureau, 340B program 2H30MC 24049. The authors would like to thank the USHTCN regional leadership, clinicians and staff for their efforts in the development and ongoing implementation of Community Counts, and especially the patients and families who contributed information comprising the database. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the CDC. Funding Information: The USHTCN includes 139 HTCs located primarily in academic medical centers and partially funded by the Health Resources and Services Administration. The USHTCN is organized in 10 geographic regions covering the continental US, Alaska, Hawaii, Guam, and Puerto Rico with leadership through regional coordinators (with nursing, social work, or public health expertise) who function as information and support conduits and regional directors (mainly hematologists) who assume responsibility for the scientific direction. ATHN was established by USHTCN members to create and manage a secure data resource. ATHN, as the coordinating center, provides the electronic data platform, training and technical assistance. CDC provides funding, programmatic guidance, laboratory testing, technical assistance, and data management, analysis, and reports. The HTCs identify and enroll eligible participants, collect specimens, and analyze, present, and publish results. CC infrastructure includes five core committees. Each committee includes representatives of ATHN, CDC, and the USHTCN. The Executive Committee provides overall direction of the project. The Administrative Committee supports the administration of CC throughout the regions. The Science Committee develops and evaluates the science of the project. A Project Review Committee evaluates proposals for analysis based on feasibility and scientific validity. A Presentation and Publication Committee reviews all project products for scientific soundness and authorship.

PY - 2018/6

Y1 - 2018/6

UR - http://www.scopus.com/inward/record.url?scp=85046034473&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85046034473&partnerID=8YFLogxK

U2 - 10.1002/ajh.25076

DO - 10.1002/ajh.25076

M3 - Letter

C2 - 29473207

AN - SCOPUS:85046034473

SN - 0361-8609

VL - 93

SP - E137-E140

JO - American Journal of Hematology

JF - American Journal of Hematology

IS - 6

ER -