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French study tracks adult PKU patients to uncover hidden neurological risks

NCT ID NCT01619722

Knowledge-focused Sponsor: University Hospital, Tours Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study followed 220 adults with phenylketonuria (PKU) in France to learn how the disease affects them later in life. Researchers looked for signs of cognitive decline, neurological problems, and how the disease impacts quality of life and social integration. No new treatment was tested; the goal was simply to gather information to guide future care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 220 people

The number the study aims to enrol. It can still change while the study runs.

Started

Mar 2012

Finished

Jul 2020

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

All adult patients with PKU during a consultation in Hospital care centers.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Patient age ≥ 18 years * Phenylketonuria (PKU) or moderate persistent Hyperphenylalaninemia (HMP) diagnosed by neonatal screening * Reading and signing an informed consent * Membership of a social security system Exclusion Criteria: * History of severe neurological definite diagnosis could interfere with the detection of neurological disorders associated with PKU

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Conditions

The condition(s) this trial relates to.

hyperphenylalaninemia due to tetrahydrobiopterin deficiency osteoporosis phenylketonuria

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Hyperphenylalaninemia PKU

Contacts and locations

Locations

  • APHM-Hôpital de la Conception -Médecine Interne

    Marseille, 13005, France

  • CHRU-Hôpital Bretonneau - Service de Médecine Interne-Nutrition

    Tours, Centre-Val de Loire, 37044, France

  • CHU de Dijon--Hôpital des Enfants-Centre de Génétique

    Dijon, 21079, France

  • CHU de Grenoble-Hôpital MICHALLON-Unité de Neurologie Générale

    Grenoble, 38043, France

  • CHU de LILLE-Hôpital Claude HURIEZ-Service d'Endocrinologie

    Lille, 59037, France

  • CHU de Rouen-Service de Pédiatrie

    Rouen, 76031, France

  • CHU de St Etienne-Hôpital Nord-Service de Pédiatrie

    Saint-Etienne, 42055, France

  • CHU du Morvan-Département de Pédiatrie et génétique médicale,

    Brest, 29609, France

  • CHU-ANGERS -Médecine Interne

    Angers, 49933, France

  • CHU-RENNES-Hôpital Sud-Service de Génétique-Clinique

    Rennes, 35203, France

  • CHU-Service de Réanimation Pédiatrique / Néonatalogie, Consultation spécialisée en Maladies Héréditaires du Métabolisme

    Nantes, 44000, France

  • CHU-Toulouse-Hôpital PURPAN-Service de Médecine Interne

    Toulouse, 31059, France

  • CHU_Service de Médecine Interne Nutrition A2-Hôpital du Haut Levèque

    Bordeaux, 33000, France

  • Hôpital Femme-Mère-Enfant-Centre de Référence des Maladies Héréditaires du Métabolisme de Lyon

    Bron, 69677, France

  • Hôpital Necker Enfants Malades, APHP-Maladies Métaboliques -Service de Pédiatrie

    Paris, 75743, France

  • University Hospital of NANCY

    Vandœuvre-lès-Nancy, 54500, France

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