SSIEM DIETITIANS GROUP

Publications of interest to dietitians

2018

Early feeding practices in infants with phenylketonuria across Europe. Mol Genet Metab Rep. 2018 Aug 8;16:82-89
Pinto A, Adams S, Ahring K, Allen H, Almeida MF, Garcia-Arenas D, et al.

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2018

International practices in the dietary management of fructose 1-6 biphosphatase deficiency. Orphanet J Rare Dis. 2018 Jan 25;13(1):21
Pinto A, Alfadhel M, Akroyd R, Atik Altınok Y, Bernabei SM, Bernstein L, Bruni G, Caine G, Cameron E, Carruthers R, Cochrane B, Daly A, de Boer F, Delaunay S, Dianin A, Dixon M, Drogari E, Dubois S, Evans S, Gribben J, Gugelmo G, Heidenborg C, Hunjan I, Kok IL, Kumru B, Liguori A, Mayr D, Megdad E, Meyer U, Oliveira RB, Pal A, Pozzoli A, Pretese R, Rocha JC, Rosenbaum-Fabian S, Serrano-Nieto J, Sjoqvist E, Timmer C, White L, van den Hurk T, van Rijn M, Zweers H, Ziadlou M, MacDonald A

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2018

Weaning practices in phenylketonuria vary between health professionals in Europe. Mol Genet Metab Rep. 2018 Nov 25;18:39-44
Pinto A, Adams S, Ahring K, Allen H, Almeida MF, Garcia-Arenas D, et al.

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2017

Dietary practices in isovaleric acidemia: A European survey. Mol Genet Metab Rep. 2017 Feb 27;12:16-22
Pinto A, Daly A, Evans S, Almeida MF, Assoun M, Belanger-Quintana A, et al.

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2017

Dietary practices in propionic acidemia: A European survey. Mol Genet Metab Rep. 2017 Oct 3;13:83-89
Daly A, Pinto A, Evans S, Almeida MF, Assoun M, Belanger-Quintana A, et al.

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2016

Protein substitutes for phenylketonuria in Europe: access and nutritional composition. Eur J Clin Nutr. 2016 Jul;70(7):785-9
Pena MJ, de Almeida MF, van Dam E, Ahring K, B�langer-Quintana A, Dokoupil K, Gokmen-Ozel H, Lammardo AM, MacDonald A, Robert M, Rocha JC.

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2015

Effect of dietary regime onmetabolic control in phenylketonuria: Is exact calculation of phenylalanine intake really necessary?
Carmen Rohde a,⁎, Alena Gerlinde Thiele a, Ulrike Ochb, Katrin Schönherr c, Uta Meyer d, Stefanie Rosenbaum-Fabian e, Cornelia Maddalon f, Sabine Matzken g, Holger Blessing h, Frauke Lang i, Monika Jörg-Streller j, Skadi Beblo

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2015

How strict is galactose restriction in adults with galactosaemia? International practice. Mol Genet Metab. 2015 May;115(1):23-6
Adam S, Akroyd R, Bernabei S, Bollhalder S, Boocock S, Burlina A, et al.

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2015

Practices in prescribing protein substitutes for PKU in Europe: No uniformity of approach. Mol Genet Metab. 2015 May;115(1):17-22
Aguiar A, Ahring K, Almeida MF, Assoun M, Belanger Quintana A, Bigot S, et al.

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2015

Special low protein foods for phenylketonuria: availability in Europe and an examination of their nutritional profile. Orphanet J Rare Dis. 2015 Dec 22;10:162
Pena MJ, Almeida MF, van Dam E, Ahring K, B�langer-Quintana A, Dokoupil K, Gokmen-Ozel H, Lammardo AM, MacDonald A, Robert M, Rocha JC.

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2013

Dietary management of urea cycle disorders: European practice. Mol Genet Metab. 2013. 110: 439-445.
Adam S, Almeida MF, Assoun M, Baruteau J, Bernabei SM, Bigot S, Champion H,Daly A, Dassy M, Dawson S, Dixon M, Dokoupil K, Dubois S, Dunlop C, Evans S, Eyskens F, Faria A, Favre E, Ferguson C, Goncalves C, Gribben J, Heddrich-Ellerbrok M, Jankowski C, Janssen-Regelink R, Jouault C, Laguerre C, Le Verge S, Link R, Lowry S, Luyten K, Macdonald A, Maritz C, McDowell S, Meyer U, Micciche A, Robert M, Robertson LV, Rocha JC, Rohde C, Saruggia I, Sjoqvist E, Stafford J, Terry A, Thom R, Vande Kerckhove K, van Rijn M, van Teeffelen-Heithoff A, Wegberg Av, van Wyk K, Vasconcelos C, Vestergaard H, Webster D, White FJ, Wildgoose J, Zweers H.

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2013

Dietary practices in pyridoxine non-responsive homocystinuria: a European survey. Mol Genet Metab. 2013. 110: 454-459
Adam S, Almeida MF, Carbasius Weber E, Champion H, Chan H, Daly A, Dixon M, Dokoupil K, Egli D, Evans S, Eyskens F, Faria A, Ferguson C, Hallam P, Heddrich-Ellerbrok M, Jacobs J, Jankowski C, Lachmann R, Lilje R, Link R, Lowry S, Luyten K, MacDonald A, Maritz C, Martins E, Meyer U, Müller E, Murphy E, Robertson LV, Rocha JC, Saruggia I, Schick P, Stafford J, Stoelen L, Terry A, Thom R, van den Hurk T, van Rijn M, van Teefelen-Heithoff A, Webster D, White FJ, Wildgoose J, Zweers H.

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2013

Nutrition education tools used in phenylketonuria: clinician, parent and patient perspectives from three international surveys. J Hum Nutr Diet.doi:10.1111/jhn.12065
Bernstein L.E., Helm J.R., Rocha J.C., Almeida M.F., Feillet F., Link R.M. & Gizewska M.

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2012

Optimising growth in phenylketonuria: current state of the clinical evidence base. Clin Nutr. 2012 Feb;31(1):16-21
Dokoupil K, Gokmen-Ozel H, Lammardo AM, Motzfeldt K, Robert M, Rocha JC, van Rijn M, Ahring K, B�langer-Quintana A, MacDonald A.

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2011

Adjusting diet with sapropterin in phenylketonuria: what factors should be considered? Br J Nutr. 2011 Jul;106(2):175-82
MacDonald A, Ahring K, Dokoupil K, Gokmen-Ozel H, Lammardo AM, Motzfeldt K, Robert M, Rocha JC, van Rijn M, B�langer-Quintana A

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2010

SSIEM Abstract 'The Evolution of the SSIEM-Dietitians Group'
Reinhild Link

Abstract to accompany poster  for SSIEM 2010 Symposium
 

2010

SSIEM Poster (english) 'The Evolution of the SSIEM-Dietitians Group'
Reinhild Link, Chair of SSIEM-DG

SSIEM 2010 Poster presentation - english

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2010

SSIEM Poster (German) "Die Gründung einer SSIEM-Dietitians Group"
Reinhild Link, Chair of SSIEM-DG

SSIEM 2010 Poster presentation - deutch
 
 

Membership Dietitians

Membership is open to SSIEM members: dietitians and nutritionists working in the field of inherited metabolic diseases and all interested in and willing to support the aims of  SSIEM-DG (Dietitians Group).

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Errors of Metabolism (SSIEM)
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