Benson13
|
2016 |
USA |
Members of the WomenHeart and FH Foundation databases |
2014 |
National |
Descriptive |
Survey data |
761 |
86 |
100 |
Familial hypercholesterolemia |
NR |
NR |
NR |
4 |
Burns14
|
2015 |
Australia |
Patients enrolled in the Australian Genetic Heart Disease Registry |
NR |
National |
Descriptive |
Survey data |
75 |
NR |
73 |
Long QT syndrome |
NR |
NR |
NR |
4 |
Campbell25
|
2017 |
USA |
2014 Minnesota State Fair |
2014 |
State |
Descriptive |
Survey data |
971 |
NR |
59 |
Familial hypercholesterolemia |
NR |
Study team |
NR |
3 |
Cheung20
|
2010 |
USA |
Tertiary referral cancer center and public county hospital in California |
1996–2008 |
Multi-center |
Descriptive |
Survey data |
1135 |
60 |
100 |
Hereditary breast and ovarian cancer |
NR |
NR |
NR |
5 |
de Souza Silva21
|
2018 |
Brazil |
Academic medical center |
NR |
Single-center |
Descriptive |
Survey data |
183 |
NR |
54 |
Familial hypercholesterolemia |
NR |
Provider (trained specialized health professional) |
NR |
3 |
Dilzell22
|
2014 |
USA |
(1) Academic medical center, (2) patients affiliated with Lynch Sydnrome International, an advocacy group |
2012–2013 |
National |
Descriptive |
Survey data |
50 |
91 |
79 |
Lynch syndrome |
NR |
NR |
NR |
3 |
Dugueperoux23
|
2016 |
France |
District in western Brittany where CF incidence is high |
1980–2004 |
Regional |
Descriptive |
Observational data |
128 |
NR |
58 |
Cystic Fibrosis |
NR |
NR |
NR |
3 |
Finlay24
|
2008 |
USA |
Academic medical center |
2004 |
Single-center |
Descriptive |
Survey data |
132 |
93 |
73 |
Hereditary breast and ovarian cancer |
NR |
Study team |
NR |
4 |
Hagoel25
|
2000 |
Israel |
National cancer control center |
NR |
Single-center |
Descriptive |
Observational data |
438 |
NR |
70 |
Hereditary breast and ovarian cancer |
NR |
Patient |
NR |
4 |
Hallowell26
|
2011 |
Scotland |
Regional cascade testing service |
2010 |
Regional |
Qualitative |
Interview data |
38 |
NR |
55 |
Familial hypercholesterolemia |
Yes |
Patient |
Yes (letters and written material) |
3 |
Hardcastle15
|
2014 |
Australia |
Lipid disorders clinic in Royal Hospital |
NR |
Regional |
Qualitative |
Interview data |
18 |
NR |
44 |
Familial hypercholesterolemia |
NR |
Screening program |
NR |
4 |
Ishii16
|
2011 |
Japan |
Cancer Institute |
2005–2009 |
Single-center |
Descriptive |
Survey data |
40 |
NR |
63 |
Lynch syndrome |
NR |
NR |
NR |
5 |
Lerman17
|
1999 |
USA |
Academic medical center |
1996–1998 |
Single-center |
Descriptive |
Survey data |
139 |
99 |
55 |
Lynch syndrome |
NR |
Provider |
NR |
4 |
Lieberman18
|
2018 |
Israel |
Medical center |
NR |
National |
Descriptive |
Survey data |
1771 |
NR |
79 |
Hereditary breast and ovarian cancer |
NR |
NR |
NR |
4 |
Maxwell19
|
2009 |
Australia |
Western Australia |
2008 |
Regional |
Descriptive |
Interview and survey data |
430 |
NR |
59 |
Familial hypercholesterolemia |
NR |
NR |
NR |
4 |
McClaren20
|
2013 |
Australia |
Children’s Hospital |
NR |
Single-center |
Mixed-methods |
Interview data |
249 |
NR |
NR |
Cystic fibrosis |
NR |
NR |
NR |
3 |
Mesters21
|
2005 |
Netherlands |
Individuals enrolled in the Netherlands Foundation for the Detection of Hereditary Tumors |
NR |
National |
Qualitative |
Interview data |
30 |
NR |
73 |
Lynch syndrome |
NR |
NR |
NR |
5 |
Montgomery22
|
2013 |
USA |
Fox Chase Cancer Center |
2000–2003 |
Single-center |
RCT |
RCT data |
422 |
92 |
100 |
Hereditary breast and ovarian cancer |
NR |
Patient |
NR |
4 |
Ormondroyd23
|
2014 |
UK |
Academic medical center |
2010–2011 |
Single-center |
Qualitative |
Interview data |
22 |
NR |
60 |
Inherited cardiac conditions |
NR |
Patient |
Yes (invitation letter and information sheet) |
5 |
Pentz24
|
2005 |
USA |
Academic medical center |
NR |
Single-center |
Qualitative |
Interview data |
80 |
85 |
65 |
Lynch syndrome |
NR |
Study team |
NR |
5 |
Raspa26
|
2006 |
USA |
National survey research registry |
2012 |
National |
Descriptive |
Survey data |
679 families |
92 |
90 |
Fragile X syndrome |
NR |
NR |
NR |
3 |
Smart27
|
2010 |
UK |
Genetics Knowledge Park program |
2005–2006 |
Multi-center |
Qualitative |
Interview data |
27 |
NR |
NR |
Inherited cardiac conditions |
NR |
NR |
NR |
5 |
Stoffel28
|
2008 |
USA |
Cancer genetics clinics in academic medical centers |
NR |
Multi-center |
Descriptive |
Survey data |
174 |
91 |
70 |
Lynch syndrome |
NR |
NR |
NR |
4 |
Suttman29
|
2018 |
USA |
Academic medical center |
NR |
National |
Qualitative |
Interview data |
21 |
67 |
0 |
Hereditary breast and ovarian cancer |
NR |
NR |
NR |
5 |
Truong30
|
2018 |
Vietnam |
Academic medical center |
NR |
Single-center |
Descriptive |
Case series data |
112 |
NR |
NR |
Familial hypercholesterolemia |
NR |
Study team |
NR |
3 |
Ulph31
|
2015 |
England |
Research university |
2008 |
National |
Qualitative |
Interview data |
67 |
68 |
NR |
Cystic Fibrosis |
NR |
NR |
NR |
5 |
van El43
|
2018 |
Netherlands |
Research university |
NR |
National |
Qualitative |
Interview data |
6 |
NR |
NR |
Familial hypercholesterolemia |
NR |
Screening program |
NR |
5 |
van Maarle33
|
2001 |
Netherlands |
Academic medical center |
1998 |
National |
Descriptive |
Survey data |
677 |
NR |
54 |
Familial hypercholesterolemia |
NR |
Screening program |
NR |
5 |
Van Rijn34
|
1997 |
Netherlands |
University hospital |
1997 |
Single-center |
Mixed-methods |
Interview data |
504 |
NR |
NR |
Fragile X Syndrome |
NR |
Patient |
NR |
3 |
Wurtmann35
|
2018 |
USA |
Academic medical center |
2016 |
Single-center |
Descriptive |
Survey data |
38 |
89 |
87 |
Familial hypercholesterolemia |
NR |
NR |
NR |
3 |