Barth Syndrome Registry July 29, 2010 Carolyn Spencer, MD and Amy E. Roberts, MD Children’s Hospital Boston.

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Presentation transcript:

Barth Syndrome Registry July 29, 2010 Carolyn Spencer, MD and Amy E. Roberts, MD Children’s Hospital Boston

Barth Syndrome Registry 65 subjects- infancy to 28 years of age 8 countries Self reported data Medical data- abstracted from medical records DNA – 50 subjects (Roberts lab) Lymphoblasts – 41 subjects (Johns Hopkins Univ.) Fibroblasts (from non-cardiac surgeries) - 3 subjects (Bill Pu) Myocardium/autopsy – 3 subjects (Amy Roberts)

Distribution of Registry Subjects, United States WA OR CA NV AZ NM MT UT WY CO SD ND NE KS OK TX AK AR MO IA MN WI IL IN MI OH KY TN MS AL GA FL LA NC SC VA WV PA NY VT NH ME MA DE MD RI ID HI NJ PR CT Number of Cases White0 Green1-2 Yellow3-5 Brown6-10 Red>10 29 From Outside US AustraliaAustralia CanadaCanada FranceFrance GermanyGermany South AfricaSouth Africa United Kingdom (13)United Kingdom (13)

Web based data entry Total number of subjects: 65 Total number of echos: 353 (50 subjects) Total number of cbc's: 239 (48 subjects) 28 measured while on GCSF 126 not on GCSF 85 GCSF status unknown Total number of growth entries: 467 (58 subjects)

Web based data entry a/ a/

Cardiomyopathy 7 Subjects have had heart transplant Of 50 subjects with echos: 30 subjects with mention of LVNC or hypertrabeculation on at least one echo 65 subjects: 57 with self reported data Of 57 subjects: 54 report + history of cardiomyopathy 3 report no cardiomyopathy

Total number of cbc's: 239 (48 subjects)  28 on GCSF  126 not on GCSF  85 GCSF status unknown

FEEDING ISSUES Of 58 completed questionnaires 26 subjects (45%) had/have an NG or G Tube