|
|
Birth Defects
Home > Genetics > Family History |
|
|
Use of Family History Information in Pediatric
Primary Care and Public Health
Dates: February
24-25, 2006
Location: Atlanta, Georgia
Sponsor: National Center on Birth Defects and Developmental
Disabilities at the Centers for Disease Control and Prevention
Presentations at the
meeting discussed the current state of family history information
use in pediatric settings, as well as specific conditions which may
serve as models for use of family history information both in
pediatric primary care and in public health.
|
|
Objectives |
Agenda and Selected
Presentations |
References
Objectives:
The specific topics on the agenda for this meeting were intended to
generate detailed, concrete discussions about these concepts, to
address some unanswered questions:
-
How can ascertainment and
utilization of relevant family history information in pediatric
primary care and public health settings be improved?
-
What barriers need to be
overcome in pediatric settings to facilitate use of family
history information?
-
How can lessons learned from
the development of current tools be applied to pediatrics?
-
What public health and
pediatric research topics should be addressed in the development
of pediatric family history tools?
-
What types and which specific
model conditions applicable to children could be incorporated
into existing or new family history tools?
-
How should the ACCE (Analytic
validity, Clinical validity, Clinical utility, Ethical, legal
and social issues) criteria be prioritized to select these
conditions? (“Analytic validity” refers to how accurately family
histories can be ascertained, “clinical validity” addresses how
well these family histories predict risks for children and
“clinical utility” deals with the utility of this information
for prevention.)
-
What ethical and economic
issues need to be considered?
-
How can we anticipate future
needs for tool development?
[Return to Top]
References
Journal Articles
Family History Information (General)
National Coalition for Health Professional Education in Genetics
(NCHPEG) newsletter articles by
Joann Bodurtha and
Marianne
Clancy
Bennett RL (2004) The family medical history. Prim Care
31:479-495
Guttmacher AE, Collins FS, Carmona RH (2004) The family
history--more important than ever. N Engl J Med 351:2333-2336
Wattendorf DJ, Hadley DW (2005) Family history: the
three-generation pedigree. Am Fam Physician 72:441-448
Assessments of Family History Use in Primary Care
Acheson LS, Wiesner GL, Zyzanski SJ, Goodwin MA, Stange KC
(2000) Family history-taking in community family practice:
implications for genetic screening. Genet Med 2:180-185
Frezzo TM, Rubinstein WS, Dunham D, Ormond KE (2003) The genetic
family history as a risk assessment tool in internal medicine.
Genet Med 5:84-91
Rich EC, Burke W, Heaton CJ, Haga S, Pinsky L, Short MP, Acheson
L (2004) Reconsidering the family history in primary care. J Gen
Intern Med 19:273-280
Family History and the ACCE Framework
Yoon PW, Scheuner MT, Khoury MJ (2003) Research priorities for
evaluating family history in the prevention of common chronic
diseases. Am J Prev Med 24:128-135
Yoon PW, Scheuner MT, Peterson-Oehlke KL, Gwinn M, Faucett A,
Khoury MJ (2002) Can family history be used as a tool for public
health and preventive medicine? Genet Med 4:304-310
Family History and Specific Conditions
Fragile X
Bailey DB, Skinner D, Sparkman K, Moore CA, Olney RS, Crawford
DS (2002) Delayed diagnosis of Fragile X Syndrome - United
States, 1990-1999. MMWR 51:740-742
Polycystic Kidney Disease
Taylor M, Johnson AM, Tison M, Fain P, Schrier RW (2005) Earlier
diagnosis of autosomal dominant polycystic kidney disease:
importance of family history and implications for cardiovascular
and renal complications. Am J Kidney Dis 46:415-423
Birth Defects
Rasmussen SA, Mulinare J, Khoury MJ, Maloney EK (1990)
Evaluation of birth defect histories obtained through maternal
interviews. Am J Hum Genet 46:478-485
Romitti PA, Burns TL, Murray JC (1997) Maternal interview
reports of family history of birth defects: evaluation from a
population-based case-control study of orofacial clefts. Am J
Med Genet 72:422-429
Coronary Artery Disease
Hunt SC, Gwinn M, Adams TD (2003) Family history assessment:
strategies for prevention of cardiovascular disease. Am J Prev
Med 24:136-142
Kardia SL, Modell SM, Peyser PA (2003) Family-centered
approaches to understanding and preventing coronary heart
disease. Am J Prev Med 24:143-151
Murabito JM, Nam BH, D'Agostino RB, Sr., Lloyd-Jones DM,
O'Donnell CJ, Wilson PW (2004) Accuracy of offspring reports of
parental cardiovascular disease history: the Framingham
Offspring Study. Ann Intern Med 140:434-440
Public Health Uses for Family History Information
NCHPEG newsletter article by Karen Edwards
Evaluations of Family History Information
Johnson J, Giles RT, Larsen L, Ware J, Adams T, Hunt SC (2005)
Utah's Family High Risk Program: bridging the gap between
genomics and public health. Prev Chronic Dis 2:1-7
Marks D, Wonderling D, Thorogood M, Lambert H, Humphries SE,
Neil HA (2002) Cost effectiveness analysis of different
approaches of screening for familial hypercholesterolaemia. BMJ
324:1303-1306.
O'Loughlin J, Lauzon B, Paradis G, Hanley J, Levy E, Delvin E,
Lambert M (2004) Usefulness of the American Academy of
Pediatrics recommendations for identifying youths with
hypercholesterolemia. Pediatrics 113:1723-1727
Salminen M, Vahlberg T, Ojanlatva A, Kivela SL (2005b) Effects
of a controlled family-based health education/counseling
intervention. Am J Health Behav 29:395-406
Web
Resources
Family History Tools and
Information
CDC
Office of Genomics and Disease Prevention: Family History
NCHPEG
newsletter, The Genetic Family History in Practice
U.S. Surgeon
General’s Family History Initiative
March
of Dimes: Genetics and Your Practice
American Medical Association: Family History Tools
Informatics Resources
HL7 overview
Continuity of Care Record (CCR) overview
General Resources
American Academy of Pediatrics
GeneTests
Genetic Alliance
Genetics Resources
On the Web (GROW)
[Return to Top]
Date:
March 22, 2006
Content source: National Center on Birth Defects and Developmental
Disabilities
|
|
|