PXE Research Conference Summaries

It's important for PXE researchers to come together and discuss the progress of their work and ways to keep research moving forward. Here you will find summaries and abstracts from past meetings. PXE International hosts a research meeting every two to five years.

2012: PXE Research Meeting

The principal researchers working on PXE from laboratories around the world convened in Bethesda, Maryland, USA, on September 24-25, 2012 to participate in the 2012 PXE Research Meeting organized by PXE International, the premier lay organization advocating on behalf of PXE patients and their families. The presentations and ensuing discussions provided state-of-the-art, up-to-date information on epidemiology, diagnostics, pathomechanisms, and treatment potential relating to PXE, with translational implications. Further research, including identification of specific molecules transported by ABCC6, is necessary for development of global, pathophysiology-related approaches to treat this currently intractable disorder.

Click here: Presentation abstracts

Click here: Summary article in Journal of Investigative Dermatology
Uitto J, Váradi A, Bercovitch L, Terry PF, Terry SF. Pseudoxanthoma Elasticum: Progress in Research Toward Treatment: Summary of the 2012 PXE International Research MeetingJ Invest Dermatol. 2013 Jun;133(6):1444-9.

Click here: Lay summary of the 2012 PXE Research Meeting

2010: PXE Research Meeting

On November 29-30, 2010, PXE International held a sponsored gathering of some of the most prominent PXE scientists in the world. Over the course of this two-day meeting, the large group presented their collective progress to date and their ongoing research efforts in the understanding of pseudoxanthoma elasticum, related scientific areas, and activities toward the development of a treatment. This fourth international PXE research meeting was funded by PXE International and by an R13 grant from the National Institutes of Health: National Institute of Arthritis Musculoskeletal and Skin Diseases (NIAMS), Office of Rare Diseases Research (ORDR), National Eye Institute (NEI), and National Institute of Child Health Development (NICHD).

Click here: Presentation abstracts and researcher awards

Click here: Summary article in American Journal of Medical Genetics
Uitto J, Bercovitch L, Terry SF, Terry PF. Pseudoxanthoma elasticum: Progress in diagnostics and research towards treatment: Summary of the 2010 PXE International Research MeetingAm J Med Genet A. 2011 Jul;155(7):1517-26.

Click here: Lay summary of the 2010 PXE Research Meeting

2009: Satellite Symposium on PXE

On September 9, 2009, as part of the 39th annual meeting of the European Society for Dermatological Research (ESDR), PXE International sponsored the second “Satellite Symposium on Pseudoxanthoma Elasticum” held at Semmelweis University in Budapest, Hungary. The meeting chairs were Dr. Jouni Uitto, Department of Dermatology and Cutaneous Biology, Jefferson Medical College, Philadelphia, PA; Dr. András Váradi, Laboratory of Active Transport Proteins, Hungarian Academy of Sciences, Budapest, Hungary; and Sharon Terry, PXE International, Washington, DC. Researchers from around the world participated in the meeting. Key presentations were given by Dr. Ivonne Pasquali-Ronchetti, Dr. András Váradi, and Dr. Jouni Uitto. Following these talks, all of the researchers participated in a brief discussion of selected abstracts and a round table dialogue regarding the implications of current research findings and how they can be applied to the quest for a treatment for PXE.

Click here: Presentation abstracts

2004: PXE Research Conference

For the second time in seven years, PXE International convened a PXE Research Meeting on October 14-15, 2004 at the Pooks Hill Marriott in Bethesda, MD. There have been many new discoveries in pseudoxanthoma elasticum research since the first meeting in 1997. The gene associated with PXE, ABCC6, was discovered, and important work on the characteristics of the protein and the cell was conducted. Also, a large epidemiological study was conducted, as were a number of smaller clinical studies. This meeting described progress in genetics, cellular and molecular biology, catalyzed the current research through knowledge and tools of related research, provided the foundation for a comprehensive research plan and determined best practices for clinical care of individuals affected by PXE.  

Click here: Presentation abstracts

1997: International Centennial Meeting

A two-day symposium entitled "International Centennial Meeting on Pseudoxanthoma Elasticum" was held in Bethesda, Maryland on November 6-7, 1997. This meeting was organized on the premise that significant progress had been made in pseudoxanthoma elasticum (PXE) research. The purpose of the meeting was to bring together investigators for an open exchange regarding recent advances. Topics included genetics, cell biology, elastic fibers, and clinical aspects of PXE. Results of this meeting guided further research in the field. The meeting was supported by the United States Public Health Service through the National Institutes of Health.

Click here: Presentation abstracts

Click here: Summary article in Journal of Investigative Dermatology
Uitto J, Boyd CD, Lebwohl MG, Moshell AN, Rosenbloom J, Terry S. International Centennial Meeting on Pseudoxanthoma Elasticum: progress in PXE researchJ Invest Dermatol. 1998 May;110(5):840-2. PMID: 9579557

1992: Consensus Conference

Individuals affected by PXE generally show a great deal of variety in the severity of symptoms, even between family members. On June 10, 1992, 40 prominent researchers and physicians working on PXE attended a consensus conference at the Jefferson Memorial College in Philadelphia, Pennsylvania to discuss and characterize the criteria used to diagnosis PXE as well as further directions for research on PXE. Dr. Jouni Uitto, of the PXE International Research Consortium, chaired the conference. The featured speaker of the conference was Dr. Victor McKusick of the Johns Hopkins School of Medicine who presented on the clinical and genetic issues associated with the diagnosis and inheritance of PXE.

Click here: Presenters and topics, diagnostic criteria, and classification of PXE

Click here: Summary article in Journal of American Academy of Dermatology
Lebwohl M, Neldner K, Pope FM, De Paepe A, Christiano AM, Boyd CD, Uitto J, McKusick VA. Classification of pseudoxanthoma elasticum: report of a consensus conferenceJ Am Acad Dermatol. 1994 Jan;30(1):103-7. PMID: 8277008

Click here: Summary article in Journal of Investigative Dermatology
Christiano AM, Lebwohl MG, Boyd CD, Uitto J. Workshop on pseudoxanthoma elasticum: molecular biology and pathology of the elastic fibers. Jefferson Medical College, Philadelphia, Pennsylvania, June 10, 1992J Invest Dermatol. 1992 Nov;99(5):660-3. PMID: 1431233