-
1
-
-
78651076334
-
-
Cystic Fibrosis Foundation
-
Cystic Fibrosis Foundation (2011) 2010 Annual report. http://www.cff.org/UploadedFiles/aboutCFFoundation/AnnualReport/ 2010-Annual-Report.pdf
-
(2011)
2010 Annual Report
-
-
-
2
-
-
0010454893
-
The epidemiology of inherited EB: Findings within American Canadian and European study populations
-
Fine JD, Bauer EA, McGuire J, Moshell A (eds) Johns Hopkins University Press: Baltimore
-
Fine JD, Johnson LB, Suchindran C et al. (1999) The epidemiology of inherited EB: findings within American Canadian and European study populations. Fine JD, Bauer EA, McGuire J, Moshell A In:(eds) Epidermolysis Bullosa: Clinical, Epidemiologic, and Laboratory Advances, and the Findings of the National Epidermolysis Bullosa Registry. Johns Hopkins University Press: Baltimore, 101-13
-
(1999)
Epidermolysis Bullosa: Clinical, Epidemiologic, and Laboratory Advances, and the Findings of the National Epidermolysis Bullosa Registry
, pp. 101-113
-
-
Fine, J.D.1
Johnson, L.B.2
Suchindran, C.3
-
3
-
-
84862317360
-
The National Registry for Ichthyosis and Related Disorder will cease operation after 2012
-
Fleckman P (2012) The National Registry for Ichthyosis and Related Disorder will cease operation after 2012. J Invest Dermatol 132:1745
-
(2012)
J Invest Dermatol
, vol.132
, pp. 1745
-
-
Fleckman, P.1
-
5
-
-
77952508673
-
Epidemiology of epidermolysis bullosa in the antipodes. the australasian epidermolysis bullosa registry with a focus on herlitz junctional epidermolysis bullosa
-
Kho YC, Rhodes LM, Robertson SJ et al. (2010) Epidemiology of epidermolysis bullosa in the antipodes. the australasian epidermolysis bullosa registry with a focus on herlitz junctional epidermolysis bullosa. Arch Dermatol 146:635-40
-
(2010)
Arch Dermatol
, vol.146
, pp. 635-640
-
-
Kho, Y.C.1
Rhodes, L.M.2
Robertson, S.J.3
-
7
-
-
77949823301
-
The International LAM Registry: A component of an innovative web-based clinician, researcher, and patient-driven rare disease research platform
-
Nurok M, Eslick I, Carvalho CR et al. (2010) The International LAM Registry: a component of an innovative web-based clinician, researcher, and patient-driven rare disease research platform. Lymphat Res Biol 8:81-7
-
(2010)
Lymphat Res Biol
, vol.8
, pp. 81-87
-
-
Nurok, M.1
Eslick, I.2
Carvalho, C.R.3
-
8
-
-
85206959166
-
-
Office of Rare Diseases Research
-
Office of Rare Diseases Research, National Institutes of Health (2012) Common Data Elements; http://rarediseases.info.nih.gov/PatientRegistry.aspx
-
(2012)
Common Data Elements
-
-
-
11
-
-
77957749180
-
Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB)
-
Rubinstein YR, Groft SC, Bartek R et al. (2010) Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). Contemp Clin Trials 31:394-404
-
(2010)
Contemp Clin Trials
, vol.31
, pp. 394-404
-
-
Rubinstein, Y.R.1
Groft, S.C.2
Bartek, R.3
-
12
-
-
80052975428
-
The international dystrophic epidermolysis bullosa patient registry: An online database of dystrophic epidermolysis bullosa patients and their COL7A1 mutations
-
van den Akker PC, Jonkman MF, Rengaw T et al. (2011) The international dystrophic epidermolysis bullosa patient registry: an online database of dystrophic epidermolysis bullosa patients and their COL7A1 mutations. Hum Mutat 32:1100-7
-
(2011)
Hum Mutat
, vol.32
, pp. 1100-1107
-
-
Van Den Akker, P.C.1
Jonkman, M.F.2
Rengaw, T.3
|