Evidence map›Paper›PMID 41683310›Full record

ArticleNutrients2026

Global Use of Casein Glycomacropeptide Protein Substitutes for Phenylketonuria (PKU): Health Professional Perspectives.

Sharon Evans, Rani Singh, Kirsten Ahring, Catherine Ashmore, Anne Daly, Suzanne Ford, Maria Ines Gama, Maria Giżewska, Melanie Hill, Fatma Ilgaz and 7 more

Abstract read
In one paragraph

Article in Nutrients, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Sharon EvansBirmingham Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.ORCID 0000-0002-7654-3621
Rani SinghDepartment of Human Genetics, Emory University School of Medicine, Atlanta, GA 30322, USA.ORCID 0000-0003-2096-2592
Kirsten AhringThe PKU Clinic, Kennedy Centre, Centre for Paediatric and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, 2100 Copenhagen, Denmark.
Catherine AshmoreBirmingham Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.
Anne DalyBirmingham Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.ORCID 0000-0003-2579-8699
Suzanne FordNational Society for Phenylketonuria (NSPKU), Sheffield S12 9ET, UK.ORCID 0000-0003-1041-2116
Maria Ines GamaBirmingham Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.
Maria GiżewskaDepartment of Pediatrics, Rare Diseases and Metabolic Medicine, Pomeranian Medical University in Szczecin, 71-252 Szczecin, Poland.ORCID 0000-0001-8433-0864
Melanie HillSheffield Teaching Hospitals NHS Foundation Trust, Sheffield S5 7AU, UK.
Fatma IlgazDepartment of Nutrition and Dietetics, Faculty of Health Sciences, Hacettepe University, Ankara 06100, Turkey.ORCID 0000-0002-6518-0255
Richard JacksonDepartment of Health Data Science, University of Liverpool, Liverpool L69 3GJ, UK.
Camille NewbyBristol Royal Hospital for Children, Upper Maudlin St, Bristol BS2 8BJ, UK.
Alex PintoBirmingham Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.
Martina TosiDepartment of Health Sciences, University of Milan, 20142 Milan, Italy.ORCID 0000-0003-4859-5288
Ozlem Yilmaz NasDepartment of Nutrition and Dietetics, Ankara University, Ankara 06760, Turkey.
Juri ZuvadelliClinical Department of Pediatrics, San Paolo Hospital, ASST Santi Paolo e Carlo, 20142 Milan, Italy.
Anita MacDonaldBirmingham Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.

Funding

Arla Foods Ingredients Group N/A
6 · The paper itself

Abstract

BACKGROUND/

objectivesCasein glycomacropeptide (cGMP) has been modified to enable its suitability as a low phenylalanine (Phe) protein substitute (PS) in phenylketonuria (PKU). No data is available about its global usage.

methodsA 60-item multiple choice and short answer/extended response questionnaire examining the use of modified cGMP in PKU was distributed globally to dietitians and physicians via web-based professional inherited metabolic disorder groups.

resultsRespondents (

conclusionsThere is global inconsistency in access to cGMP PS suitable for PKU, and in the interpretation of evidence-based research. Some professionals have significant concerns about its nutritional composition particularly residual Phe, limiting its estimated use to approximately 25% of PKU patients globally.

Indexed as

CaseinsPeptide FragmentsPhenylketonuriasAdultChildDietary ProteinsFemaleHumansNutritionistsPhenylalanineSurveys and QuestionnairescaseinomacropeptideCaseinsDietary ProteinsPeptide FragmentsPhenylalaninecasein glycomacropeptidedietitianphenylketonuriaphysicianPKUprotein substitutequestionnaire

Identifiers

PMID41683310
PMCPMC12899376

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.