Global Patient Registry to Monitor Long-term Safety and Effectiveness of Increlex® in Children and Adolescents With Severe Primary Insulin-like Growth Factor-1 Deficiency (SPIGFD).

NCT ID: NCT00903110

Last Updated: 2025-11-28

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

500 participants

Study Classification

OBSERVATIONAL

Study Start Date

2008-12-09

Study Completion Date

2027-12-31

Brief Summary

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The Increlex® Global Registry is a descriptive, multicenter, observational, prospective, open-ended, non interventional, post-authorisation surveillance registry.

The main purpose of this global registry is to collect, analyse and report safety data during and up to at least 5 years after the end of treatment in children and adolescents receiving Increlex® therapy for SPIGFD according to the locally approved product information.

Detailed Description

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This registry is a Post-Authorisation Safety Study called the Increlex® Global Registry which is intended primarily to monitor the safety of Increlex® therapy in children and adolescents with Severe Primary IGF-1 Deficiency and secondly to follow the effectiveness of this treatment. Patients who have already started Increlex® therapy before entering this registry may be included and data will be collected retrospectively.

The countries participating in this registry are Austria, France, Germany, Italy, Poland, Spain, Sweden, United Kingdom and the USA

Conditions

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IGF1 Deficiency

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

OTHER

Interventions

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Increlex®

Increlex® (mecasermin \[rDNA origin\] injection), 10 mg/ml solution for injection, 40-120mcg/kg BID or 0,04 to 0,12 mg/kg BID, as prescribed by physician

Intervention Type DRUG

Eligibility Criteria

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Inclusion Criteria

* For US : patients starting or planning to start or currently receiving treatment with Increlex® therapy for severe primary IGF-1 deficiency as defined by the US Increlex® prescribing information or for growth hormone (GH) gene deletion who have developed neutralizing antibodies to GH.For EU : patients starting or planning to start or currently receiving treatment with Increlex® therapy according to the locally approved product information.
* Parents or legally authorized representatives if applicable must give signed informed consent before any registry-related activities are conducted. Assent from the subject should also be obtained as appropriate

Exclusion Criteria

* Subject currently participating in an Increlex® clinical trial
* Subject currently participating in any clinical trial for growth retardation
* Patient with any contraindication to Increlex® or any condition subject to special warning as per the locally approved label
* For US patients, these include patients with hypersensitivity to the active substance or any of the excipients, patients with active or suspected neoplasia and patients with closed epiphyses.
* For EU patients: these include patients with hypersensitivity to the active substance or any of the excipients, patients with active or suspected neoplasia or any condition or medical history which increases the risk of benign or malignant neoplasia and patients with closed epiphyses
Minimum Eligible Age

2 Years

Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Ipsen

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Ipsen Medical Director

Role: STUDY_DIRECTOR

Ipsen

Locations

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Children's Hospital of Orange County

Orange, California, United States

Site Status RECRUITING

University of Miami Leonard M Miller

Miami, Florida, United States

Site Status RECRUITING

University Of Miami Leonard M. Miller

Miami, Florida, United States

Site Status RECRUITING

D&H National Research Centers

Miami, Florida, United States

Site Status WITHDRAWN

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Site Status RECRUITING

UT Southwestern Medical Center

Dallas, Texas, United States

Site Status NOT_YET_RECRUITING

Children's Health Specialty Center West Plano

Plano, Texas, United States

Site Status WITHDRAWN

Salzkammergut-Klinik Vöcklabruck

Vöcklabruck, , Austria

Site Status RECRUITING

Hôpital Amiens-Picardie

Amiens, , France

Site Status TERMINATED

Centre Hospitalier de Blois

Blois, , France

Site Status RECRUITING

Hôpital Jean Verdier

Bondy, , France

Site Status RECRUITING

Hôpital Femme Mère-Enfant

Bron, , France

Site Status RECRUITING

Hôpital Estaing

Clermont-Ferrand, , France

Site Status RECRUITING

Hôpital Timone Enfants

Marseille, , France

Site Status RECRUITING

Hôpital Arnaud de Villeneuve

Montpellier, , France

Site Status RECRUITING

GHR Mulhouse Sud-Alsace

Mulhouse, , France

Site Status TERMINATED

Pole medical Bel'Air

Mulhouse, , France

Site Status RECRUITING

CHU Lenval

Nice, , France

Site Status WITHDRAWN

Hôpital Necker Enfants Malades

Paris, , France

Site Status RECRUITING

Hôpital Kremlin Bicetre

Paris, , France

Site Status RECRUITING

Hôpital des Enfants

Toulouse, , France

Site Status RECRUITING

Hôpital de Cayenne

Cayenne, , French Guiana

Site Status WITHDRAWN

Universitätsklinikum Erlangen Kinder- und Jugendklinik

Erlangen, , Germany

Site Status RECRUITING

Universitätsklinikum Heidelberg Kinderheilkunde

Heidelberg, , Germany

Site Status RECRUITING

Universitätskliniken des Saarlandes Kinderklinik

Homburg, , Germany

Site Status RECRUITING

Klinikum der Otto von Guericke Universität

Magdeburg, , Germany

Site Status TERMINATED

Klinikum Oldenburg

Oldenburg, , Germany

Site Status TERMINATED

Diabetologia Pediatrica Azienda Ospedaliero-Universitaria

Ancona, , Italy

Site Status NOT_YET_RECRUITING

Ospedale di Bolzano

Bolzano, , Italy

Site Status RECRUITING

Spedali Civili di Brescia

Brescia, , Italy

Site Status TERMINATED

Azienda ospedaliera universitaria Meyer

Florence, , Italy

Site Status NOT_YET_RECRUITING

I.R.C.C.S. Giannina Gaslini

Genova, , Italy

Site Status RECRUITING

U.O. Pediatria e Neonatologia Ospedale di Macerata

Macerata, , Italy

Site Status TERMINATED

Azienda Ospedaliera Universitaria II

Naples, , Italy

Site Status NOT_YET_RECRUITING

Azienda Ospedaliera-Universitaria di Parma

Parma, , Italy

Site Status NOT_YET_RECRUITING

Azienda USL-IRCCS

Reggio Emilia, , Italy

Site Status RECRUITING

Ospedale Pediatrico Bambino Gesù

Roma, , Italy

Site Status RECRUITING

Hôpital Pierre Zobda Quitman

Fort-de-France, , Martinique

Site Status RECRUITING

Samodzielny Publiczny Dzieciecy Szpital Kliniczny

Bialystok, , Poland

Site Status RECRUITING

Uniwersyteckie Centrum Kliniczne

Gdansk, , Poland

Site Status RECRUITING

Uniwersytecki Szpital Dziecięcy w Lublinie

Lublin, , Poland

Site Status RECRUITING

Szpital kliniczny im. Karola Jonschnera

Poznan, , Poland

Site Status RECRUITING

Kliniczny Szpital Wojewódzki

Rzeszów, , Poland

Site Status RECRUITING

Pomeranian Medical University

Szczecin, , Poland

Site Status RECRUITING

Hospital Univ Vall d'Hebrón

Barcelona, , Spain

Site Status TERMINATED

Hospital Parc Taulí de Sabadell

Barcelona, , Spain

Site Status RECRUITING

Hospital Sant Joan de Déu

Barcelona, , Spain

Site Status RECRUITING

Hospital Univ. de Cruces

Bilbao, , Spain

Site Status RECRUITING

Hospital Universitari Sant Joan de Reus

Reus, , Spain

Site Status RECRUITING

Hospital Universitario y Politécnico La Fe

Valencia, , Spain

Site Status RECRUITING

Linköping University Hospital

Linköping, , Sweden

Site Status RECRUITING

Karolinska Universitetssjukhuset

Stockholm, , Sweden

Site Status RECRUITING

Royal Belfast Hospital for Sick Children

Belfast, , United Kingdom

Site Status RECRUITING

Birmingham Children's Hospital

Birmingham, , United Kingdom

Site Status TERMINATED

Leeds General Infirmary

Leeds, , United Kingdom

Site Status RECRUITING

The Royal London Hospital

London, , United Kingdom

Site Status RECRUITING

Great Ormond Street Hospital

London, , United Kingdom

Site Status RECRUITING

Royal Manchester Children's Hospital

Manchester, , United Kingdom

Site Status TERMINATED

Countries

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United States Austria France French Guiana Germany Italy Martinique Poland Spain Sweden United Kingdom

Central Contacts

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Ipsen Recruitment Enquiries

Role: CONTACT

Facility Contacts

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Z

Role: primary

References

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Bang P, Polak M, Bossowski A, Maghnie M, Argente J, Ramon-Krauel M, Sert C, Perrot V, Mazain S, Woelfle J. Frequency and Predictive Factors of Hypoglycemia in Patients Treated With rhIGF-1: Data From the Eu-IGFD Registry. J Clin Endocrinol Metab. 2023 Dec 21;109(1):46-56. doi: 10.1210/clinem/dgad479.

Reference Type DERIVED
PMID: 37579214 (View on PubMed)

Bang P, Polak M, Perrot V, Sert C, Shaikh H, Woelfle J. Pubertal Timing and Growth Dynamics in Children With Severe Primary IGF-1 Deficiency: Results From the European Increlex(R) Growth Forum Database Registry. Front Endocrinol (Lausanne). 2022 Feb 18;13:812568. doi: 10.3389/fendo.2022.812568. eCollection 2022.

Reference Type DERIVED
PMID: 35250870 (View on PubMed)

Bang P, Woelfle J, Perrot V, Sert C, Polak M. Effectiveness and safety of rhIGF1 therapy in patients with or without Laron syndrome. Eur J Endocrinol. 2021 Feb;184(2):267-276. doi: 10.1530/EJE-20-0325.

Reference Type DERIVED
PMID: 33434161 (View on PubMed)

Other Identifiers

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EUPAS7708

Identifier Type: OTHER

Identifier Source: secondary_id

2-79-52800-002

Identifier Type: -

Identifier Source: org_study_id

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