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

Manco‐Johnson, Marilyn J.; Byams, Vanessa R.; Recht, Michael; Dudley, Becky; Dupervil, Brandi; Aschman, Diane; Oakley, Meredith; Kapica, Suzanne; Voutsis, Mariam; Humes, Steven; Kulkarni, Roshni; Grant, Althea M.

doi:10.1002/ajh.25076

Cited by 17 publications

(28 citation statements)

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“…In 2012, in collaboration with the US HTC Network (USHTCN) and the American Thrombosis and Hemostasis Network (ATHN), CDC began collecting data on all people with bleeding disorders who received care at a network HTC at any time during each year through a surveillance programme called Community Counts 3 . Because routine treatment for the disorder is expensive and complications can be severe, estimates of the size and characteristics of the US haemophilia population are needed for healthcare planning and resource needs assessment.…”

Section: Introductionmentioning

confidence: 99%

Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres

et al. 2020

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Haemophilia. 2020;26:487-493.wileyonlinelibrary.com/journal/hae | 487 | INTRODUC TI ONHaemophilia is an X-linked, inherited disorder that results from mutations in the genes that code for one of two proteins necessary for normal blood clotting, factor VIII (haemophilia A) or factor IX (haemophilia B). Haemophilia A (HA) is more common than haemophilia B (HB); however, both disorders primarily affect males and result in bleeding in organs, tissues and joints in response to trauma and Introduction: Estimates of the size and characteristics of the US haemophilia population are needed for healthcare planning and resource needs assessment. A network of comprehensive haemophilia treatment centres (HTCs) located throughout the United States receives federal support for diagnosis and management of haemophilia and other rare bleeding disorders.Aim: Estimate the incidence and prevalence of haemophilia among US males using the HTC network. Methods:During the period 2012-2018, de-identified surveillance data were collected on all males who visited an HTC that included year of birth, gender, race, Hispanic ethnicity, residence zip code, haemophilia type and severity. Data from all patients were used to calculate period prevalence by haemophilia type, severity and state of residence. Data from a subset of patients born 1995-2014 were used to estimate incidence rates over the 20-year period.

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Section: Introductionmentioning

confidence: 99%

Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres

et al. 2020

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“…For the last two decades, coordinated data collection from haemophilia treatment centres (HTCs) in the United States has been facilitated by various iterations of electronic data collection tools, currently the American Thrombosis and Hemostasis Network (ATHN) Clinical Manager application in collaboration with Centers for Disease Control and Prevention (CDC) surveillance, most recently through Community Counts . Clinical Manager has demonstrated security, flexibility and the capability to both incorporate standard and innovative measures and facilitate investigator‐initiated clinical research.…”

Section: Scientific and Infrastructure Priorities: Challenges And Oppmentioning

confidence: 99%

“…Data fields would be harmonized to accommodate international collaboration as data sharing policies evolve. In the United States, this could be achieved by enhancements to existing data collection systems and database platforms, as described earlier in this paper ○A future centralized biorepository would be created de novo with the highest standards for storage and distribution and have the capability to perform real‐time processing of samples.…”

Section: Strategic Implementation For Future Data and Repository Collmentioning

confidence: 99%

The national blueprint for 21st century data and specimen collection and observational cohort studies: NHLBI State of the Science Workshop on factor VIII inhibitors

Konkle

Recht

2019

Haemophilia

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Introduction A devastating complication of hemophilia A, the congenital deficiency of coagulation factor VIII (FVIII), therapy is the development of inhibitory antibodies (inhibitors) to infused FVIII concentrate affecting up to 30% of people with the most severe form of the disease. Although the number of patients affected by hemophilia A with inhibitors is small, the physical, emotional, financial, and public health impact is overwhelming to the patient, family, and medical system. To best serve this patient population, as well as enhance knowledge around this complication, a robust data and specimen collection strategy must be designed. Aim Working Group 2 (WG2) of the National Heart, Lung, and Blood Institute (NHLBI)‐ sponsored State of the Science (SOS) workshop on factor VIII inhibitors in 2018 was tasked with developing recommendations around the conduct of research, modeling efficient data and specimen collection, developing infrastructure support, establishing partnerships with all stakeholders, including international collaborators, addressing ethical issues, maximizing patient/family engagement and promoting training opportunities. Methods A group with diverse expertise was assembled who reviewed the current state of data and specimen collection in patients with hemophilia and developed recommendations for the future. Results Our results were presented at the SOS Workshop where additional feedback was gained. Conclusion Our charge and recommendations are summarized in this manuscript.

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“…It will serve as a platform for research to improve the clinical outcomes in this vulnerable population. In addition, PUPs at US HTCs may be enrolled in the CDC Community Counts registry, which is public health surveillance focused on inhibitor development …”

Section: Cohort Studies Registries and Public Health Surveillancementioning

confidence: 99%

How I approach: Previously untreated patients with severe congenital hemophilia A

Thornburg

2018

Pediatric Blood & Cancer

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Previously untreated patients with severe hemophilia A are a vulnerable population at risk for severe bleeding which is currently managed with exogenous clotting factor replacement. The primary burden of current treatment is high‐titer inhibitor development. Evolving data on current treatment products as well as emerging therapeutics may inform treatment decisions to prevent bleeding and inhibitor formation. Considerations for diagnosis, education, and shared decision‐making related to product choice and treatment regimen are discussed.

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

Cited by 17 publications

References 5 publications

Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres

Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres

The national blueprint for 21st century data and specimen collection and observational cohort studies: NHLBI State of the Science Workshop on factor VIII inhibitors

How I approach: Previously untreated patients with severe congenital hemophilia A

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