Publications

European lipodystrophy registry: background and structure 

Orphanet J Rare Dis. 2020 Jan 15; 15(1): 17.
Julia von Schnurbein, Claire Adams, Baris Akinci, Giovanni Ceccarini, Maria Rosaria D’Apice, Alessandra Gambineri, Raoul C M Hennekam, Isabelle Jeru, Giovanna Lattanzi, Konstanze Miehle, Gabriele Nagel, Giuseppe Novelli, Ferruccio Santini, Ermelinda Santos Silva, David B Savage, Paolo Sbraccia, Jannik Schaaf, Ekaterina Sorkina, George Tanteles, Marie-Christine Vantyghem, Camille Vatier, Corinne Vigouroux, Elena Vorona, David Araújo-Vilar, Martin Wabitsch

PMID: 31941540

PMCID: PMC6964101

DOI: 10.1186/s13023-020-1295-y

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The Metreleptin Effectiveness and Safety Registry (MEASuRE): concept, design and challenges

Haymond MW, Araújo-Vilar D, Balser J, Lewis JH, Louzado R, Musso C, von Schnurbein J, Wabitsch M; MEASuRE group. The Metreleptin Effectiveness and Safety Registry (MEASuRE): concept, design and challenges. Orphanet J Rare Dis. 2023 May 26;18(1):127.

PMID: 37237416

PMCID: PMC10214317.

DOI: 10.1186/s13023-023-02714-5. 

 

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Lipodystrophy Prevalence, „Lipodystrophy-Like Phenotypes,“ and Diagnostic Challenges

Akinci B, von Schnurbein J, Araujo-Vilar D, Wabitsch M, Oral EA. Lipodystrophy Prevalence, „Lipodystrophy-Like Phenotypes,“ and Diagnostic Challenges. Diabetes. 2024 Jul 1;73(7):1039-1042. 

PMID: 38900954.

DOI: 10.2337/dbi24-0018.

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Potential Impact of Parental Origin of Inheritance on the Clinical Presentation of Familial Partial Lipodystrophy Type 2 Syndrome

Gilio D, Besci O, Guidorizzi NR, Guler MC, Simsir IY, Pelosini C, Ceccarini G, Demir K, Akinci B, Santini F; ECLip (European Consortium of Lipodystrophy); Foss-Freitas MC, Oral EA. Potential Impact of Parental Origin of Inheritance on the Clinical Presentation of Familial Partial Lipodystrophy Type 2 Syndrome. Clin Endocrinol (Oxf). 2025 Jul 16. Epub ahead of print.

PMID: 40671313

DOI: 10.1111/cen.15303

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Epidemiological and clinical data from the European
Lipodystrophy Registry

Ceccarini G, Vatier C, Akinci B, Belalem I, Broekema M, Csajbok E, Rosaria D’Apice M, Gambineri A, Heldt K, Heni M, Kleinendorst L, Krause K, Lattanzi G, Miehle K, Palladino L, Prodam F, Santini F, Santos Silva E, Savage DB, Sbraccia P, Scherer T, Sorkina E, Štotl I, Vantyghem MC, Vigouroux C, Vorona E, Araújo-Vilar D, Wabitsch M, Nagel G, von Schnurbein J; ECLip Registry Consortium. Epidemiological and clinical data from the European Lipodystrophy Registry. Eur J Endocrinol. 2025 Oct 30;193(5):685-703.

PMID: 41152002

DOI: 10.1093/ejendo/lvaf214 

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