By Sherrie Palm

The evolution of healthcare typically follows a winding course with multiple rough corners to navigate. Sometimes an event spawns forward momentum; surgical complications, medication side effects, and unexpected research discoveries have each paved paths to better healthcare going back hundreds of years. The lash back from mesh complications generated much energy toward dissecting and understanding which treatments are effective for successful and sustainable pelvic organ prolapse (POP) treatment.

The PFD Registry was organized by AUGS (American Urogynecologic Society) as a collaboration of multiple agencies in a consortium to assess the effectiveness, safety, and quality of life outcomes of current surgical and non-surgical treatments for pelvic organ prolapse. Organizations formerly competing with each other are now working side by side for the greater good of women’s pelvic floor health ballast. Representation of and input from the women navigating pelvic organ prolapse has also been included, a valuable step toward acknowledging the reality of POP impact to women’s lives. Societies participating with AUGS in this momentous venture represent healthcare, government, industry, research, and patient advocacy; FDA (Food and Drug Administration), NIH (National Institutes of Health), NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases), NIA (National Institute on Aging), CMS (Centers for Medicare and Medicaid Services), SUFU (Society of Urodynamics, Female Pelvic Medicine, and Urogenital Reconstruction), AUA (American Urological Association), ACOG (American Congress of Obstetricians and Gynecologists), ABOG (American Board of Obstetrics and Gynecology), Coloplast, Boston Scientific, American Medical Systems, ACell, and APOPS (Association for Pelvic Organ Prolapse Support) are sharing insights toward POP treatment progression.

Lack of statistical capture, lack of screening protocol, lack of treatment follow-up, and without a doubt lack of awareness all need to be addressed. The PFD Registry is a significant step in the right direction.

Clinical decisions related to treatment for health conditions lean heavily on research data; POP is a relatively new specialty field and necessary facts and figures lag behind other fields. Which surgical procedures are most effective? Which have long-term results? Which are least invasive? Which eliminate all symptoms? Since there are five types of POP and 4 grades of severity, every woman’s case has aspects of similarity and every woman’s case has aspects of uniqueness. There are no simple answers.

The vision of the PFD Registry is to track surgeon volume (how many procedures and what type), patient short and long term results from both physician and patient standpoint, patient quality of life, and safety outcome. Both mesh and non-mesh repairs will be tracked as will non-surgical treatment of POP with pessaries. Additional objectives include identifying risk factors associated with complications , both those that are can be modified such as techniques and devices, and those that are more difficult to address such as additional health conditions. In the future, the PFD Registry will be able to provide a valuable database for pelvic floor disorder research.

We have so much more to do; we have so much more to learn. Women with POP are hungry for hope. Pelvic organ prolapse is without a doubt the biggest secret in women’s health; as pelvic organ prolapse becomes more widely recognized and acknowledged, the stigma of symptoms will soften and women who have been navigating those symptoms for years with no logical explanation of cause will find the answers they seek. We move forward side by side.


December 2013