NCT02915510

Brief Summary

This study will evaluate the safety, gastrointestinal (GI) tolerance, acceptability and compliance of a Glycomacropeptide-based protein substitute for patients with Phenylketonuria (PKU).

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
40

participants targeted

Target at P25-P50 for not_applicable

Timeline
Completed

Started Jul 2016

Typical duration for not_applicable

Geographic Reach
1 country

5 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

July 1, 2016

Completed
1 month until next milestone

First Submitted

Initial submission to the registry

August 8, 2016

Completed
2 months until next milestone

First Posted

Study publicly available on registry

September 27, 2016

Completed
3 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 27, 2019

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

September 27, 2019

Completed
Last Updated

October 1, 2019

Status Verified

September 1, 2019

Enrollment Period

3.2 years

First QC Date

August 8, 2016

Last Update Submit

September 27, 2019

Conditions

Outcome Measures

Primary Outcomes (1)

  • Blood Phenylalanine (and other amino acids)

    Blood spot test

    3 points throughout 28 days

Secondary Outcomes (7)

  • Gastro-intestinal tolerance questionaire

    12/31 days

  • Product compliance questionaire

    31 days

  • Product acceptability questionnaire

    2/31 days

  • Patient reproted nutrient intake (3 day food diaries)

    6/31 days

  • Pateint-reported appetite (visual analogue scale)

    6/31 days

  • +2 more secondary outcomes

Study Arms (1)

GMP

EXPERIMENTAL

Single arm designed, 3 day baseline, 28day on GMP

Dietary Supplement: Glycomacropeptide-based protein substitute

Interventions

Eligibility Criteria

Age3 Years+
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Male or female
  • Over 3 years of age
  • Diagnosed with classical or variant type phenylketonuria
  • Have been compliant in taking at least one amino acid-based, Phe-free protein substitute, providing at least 20g protein equivalents, for at least 1 month prior to trial commencement
  • Have a prescribed daily Phe allowance
  • Written informed consent from patient, or from parent / carer if applicable

You may not qualify if:

  • Currently prescribed Sapropterin or similar tetrahydrobiopterin based medication
  • Pregnant or lactating
  • Requiring parenteral nutrition
  • Major hepatic or renal dysfunction
  • Participation in other studies within 1 month prior to entry of this study
  • Allergy to any of the study product ingredients, including milk protein or soya
  • Investigator concern around willingness/ability of patient or parent/carer to comply with protocol requirements

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (5)

Great Ormond Street Hospital

London, United Kingdom

Location

Guy's and St Thomas' NHS Fondation Trust

London, United Kingdom

Location

UCLH

London, United Kingdom

Location

Royal Manchester Children's Hospital

Manchester, United Kingdom

Location

Sheffield Teaching Hospital

Sheffield, United Kingdom

Location

MeSH Terms

Conditions

Phenylketonurias

Condition Hierarchy (Ancestors)

Brain Diseases, Metabolic, InbornBrain Diseases, MetabolicBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesAmino Acid Metabolism, Inborn ErrorsMetabolism, Inborn ErrorsGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesMetabolic DiseasesNutritional and Metabolic Diseases

Study Officials

  • Rebecca Stratton, PHd

    Nutricia Ltd UK

    STUDY DIRECTOR

Study Design

Study Type
interventional
Phase
not applicable
Allocation
NA
Masking
NONE
Purpose
SUPPORTIVE CARE
Intervention Model
SINGLE GROUP
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

August 8, 2016

First Posted

September 27, 2016

Study Start

July 1, 2016

Primary Completion

September 27, 2019

Study Completion

September 27, 2019

Last Updated

October 1, 2019

Record last verified: 2019-09

Data Sharing

IPD Sharing
Will not share

Locations