Skip to main content
OpenTrials
Completed

NCT Number: NCT00668291

Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the CARNEY Complex (CNC)

Cohort CNC-PPNAD will be investigated with clinical, genetic, biological and imaging work-up every year during 3 years. Cohort L-MC will be investigated clinically at inclusion and a PERKAR1A genotype will be performed.

Completed

Looking for future studies?

Notify Me

Key information

Conditions

Primary; Complex Abnormalities, Multiple Cardiac Myxoma Cardiovascular Diseases Carney Complex Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Heart Diseases Heart Neoplasms Myxoma Neoplasms Neoplasms by Histologic Type Neoplasms by Site Neoplasms, Connective Tissue Neoplasms, Connective and Soft Tissue Periorificial Lentiginosis Pigmented Nodular Adrenocortical Disease, Primary, 1 Skin Abnormalities Thoracic Neoplasms

Sex eligibility

All sexes

Study type

Observational

Primary location

Hôpital Cochin

Paris, 75679, France

About this study

The primary aim is to assess the clinical manifestations of the CARNEY Complex (CNC) and/or the primary pigmented nodular adrenocortical disease (PPNAD) in patients with CNC, isolated PPNAD or carriers of PRKAR1A and PPNAD1 (PDE11A4) germline mutation (Cohort CNC-PPNAD). In this cohort genotype/phenotype correlation will be studied. A second aim is to determine the frequency of PRKAR1A germline mutation in patients with isolated cardiac myxoma or isolated lentiginosis (Cohort L-MC).

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

CNC group :

  • patient with the CARNEY complex (CNC) or the primary pigmented nodular adrenocortical disease (PPNAD) or a germinal mutation of the gene of CARNEY Complex or PPNAD.
  • No age criteria
  • Inform consent of the patient or the parental authority collected
  • Realization of a preliminary medical examination
  • Affiliated with a social security system ( profit or having right)

MC-L group :

  • Patient with periorificial lentiginosis or cardiac myxoma
  • or previous history of periorificial lentiginosis or cardiac myxoma
  • age > or = 18 years old
  • Realization of a preliminary medical examination
  • Affiliated with a social security system ( profit or having right)

Exclusion criteria

CNC group and MC-L group:

  • refusal or incapacity to take part in the study

Treatment and study plan

Primary outcomes

  1. To assess the clinical manifestations of the CARNEY Complex (CNC) and/or the primary pigmented nodular adrenocortical disease (PPNAD)

    Time frame: 6 months

Secondary outcomes

  1. Genotype/phenotype correlation. To determine the frequency of PRKAR1A germline mutation in patients with isolated cardiac myxoma or isolated lentiginosis.

    Time frame: 6 months

Sponsors and collaborators

Lead sponsor

Assistance Publique - Hôpitaux de Paris

Other

Collaborators

  • URC-CIC Paris Descartes Necker Cochin

Registry information

Official study title

Assessment of the Clinical Symptoms of the Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the CARNEY Complex (CNC).

Acronym: EVACARNEY

Important dates

Study start
2008
Primary completion
2015
Study completion
2016
First posted
Apr 29, 2008
Registry last updated
Nov 20, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Related clinical trials

Published trials that share one or more normalized conditions with this study.