| Title |
Estimating the prevalence of generalized and partial lipodystrophy: findings and challenges
|
|---|---|
| Published in |
Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy, September 2017
|
| DOI | 10.2147/dmso.s130810 |
| Pubmed ID | |
| Authors |
Elaine Chiquette, Elif A Oral, Abhimanyu Garg, David Araújo-Vilar, Praveen Dhankhar |
| Abstract |
Lipodystrophy (LD; non-human immunodeficiency virus [HIV]-associated) syndromes are a rare body of disorders for which true prevalence is unknown. Prevalence estimates of rare diseases are important to increase awareness and financial resources. Current qualitative and quantitative estimates of LD prevalence range from ~0.1 to 90 cases/million. We demonstrate an approach to quantitatively estimate LD prevalence (all, generalized, and partial) through a search of 5 electronic medical record (EMR) databases and 4 literature searches. EMR and literature searches were conducted from 2012 to 2014. For the EMR database searches (Quintiles, IMS LifeLink, General Electric Healthcare, and Humedica EMR), LD cases were identified by the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) code 272.6 (United Kingdom General Practice Research Database used other diagnostic codes to identify LD) plus additional LD-associated clinical characteristics (patients with HIV or documented HIV treatment were excluded). Expert adjudication of cases was used for the Quintiles database only. Literature searches (PubMed and EMBASE) were conducted for each of the 4 major LD subtypes. Prevalence estimates were determined by extrapolating the total number of cases identified for each search to the database population (EMR search) and European population (literature search). The prevalence range of all LD across all EMR databases was 1.3-4.7 cases/million. For the adjudicated Quintiles search, the estimated prevalence of diagnosed LD was 3.07 cases/million (95% confidence interval [CI], 2.30-4.02), 0.23 cases/million (95% CI, 0.06-0.59) and 2.84 cases/million (95% CI, 2.10-3.75) for generalized lipodystrophy (GL) and partial lipodystrophy (PL), respectively. For all literature searches, the prevalence of all LD in Europe was 2.63 cases/million (0.96 and 1.67 cases/million for GL and PL, respectively). LD prevalence estimates are at the lower range of previously established numbers, confirming that LD is an ultra-rare disease. The establishment of diagnostic criteria and coding specific to the 4 major LD subtypes and future studies/patient registries are needed to further refine our estimates. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| France | 1 | 50% |
| Unknown | 1 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Scientists | 1 | 50% |
| Practitioners (doctors, other healthcare professionals) | 1 | 50% |
Mendeley readers
The data shown below were compiled from readership statistics for 99 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 99 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 13 | 13% |
| Student > Bachelor | 10 | 10% |
| Student > Ph. D. Student | 8 | 8% |
| Student > Master | 7 | 7% |
| Other | 6 | 6% |
| Other | 14 | 14% |
| Unknown | 41 | 41% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 31 | 31% |
| Biochemistry, Genetics and Molecular Biology | 10 | 10% |
| Pharmacology, Toxicology and Pharmaceutical Science | 3 | 3% |
| Agricultural and Biological Sciences | 2 | 2% |
| Psychology | 2 | 2% |
| Other | 9 | 9% |
| Unknown | 42 | 42% |
Attention Score in Context
This research output has an Altmetric Attention Score of 4. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 23 August 2022.
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#7,388,045
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Outputs from Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy
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#108,027
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Outputs of similar age from Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy
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