PCOS

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MISSION STATEMENT:

Polycystic ovary syndrome (PCOS) is a common endocrinopathy that presents in adolescence. The diagnosis of PCOS can be challenging and is associated with conditions also treated by endocrinologists including obesity, dyslipidemia, dysglycemia.  As pediatric endocrinologists, we are at the forefront of managing PCOS in children and have traditionally written the guidelines for diagnosis and treatment. It is crucial to establish initiatives among pediatric endocrinologists to optimize PCOS management, by advocating for policies to promote healthier lifestyles, improving understanding of the array of treatment options, and completing investigations aimed at identifying novel therapies.

The PCOS Special Interest Group is a forum of stakeholder members to collaborate and facilitate communication and to network with colleagues interested in PCOS in adolescents.  We intend to provide support and guidance for the pediatric endocrinology community to: disseminate recent guidelines on medical management, support research initiatives either through PES or collaborations with other aligned organizations with similar goals, provide educational resources for patients, fellows in training, and practicing physicians and providers, and advocate for improved models of care delivery and appropriate reimbursement for quality care.

AIMS

Standardize medical management

• To disseminate and implement recommendations for appropriate diagnostic testing in girls based on current guidelines and new research findings.
• To provide optimal management approaches for girls with PCOS based on current guidelines and newer treatment modalities.
• To increase awareness and to educate subspecialists in pediatric endocrinology, diabetology and other disciplines including general pediatrics, adolescent medicine and pediatric gynecology regarding the potential for PCOS in adolescent girls
• To provide additional training and resources for endocrinologists in the management of PCOS comorbidities such as depression, dermatologic conditions or beyond basic menstrual regulation for those patients with reduced access to other subspecialty care

Research

• To promote access for PES members to resources supporting existing basic and clinical research and QI projects
• To develop curriculum for PCOS research for fellows and junior faculty
• To advocate to funding organizations for the importance of funding PCOS research in order to support members’ efforts to obtain funding for PCOS-related projects
• Explore if PCOS is more frequent in adolescents with type 1 diabetes, and if these patients need a specialized treatment approach.
• Determine how to best diagnose new type 2 diabetes in girls who are already treated with metformin for PCOS symptoms.

Education

• To update clinical management guidelines when new data would warrant this, reflecting current clinical recommendations and up-to-date therapeutic options
• To educate pediatricians and primary care providers regarding the need for standardized targeted PCOS screening for at-risk girls, and to encourage an active role for the primary care provider in the management of risk factors and co-morbidities
• To educate physicians regarding the interplay of risk factors in PCOS co-morbidities (obesity; inactivity); and to provide current research data and clinical guidelines that will help guide patient care and treatment options
• Partner with organizations representing other specialties who provide PCOS care, namely pediatric gynecology and adolescent medicine to ensure widespread dissemination of current international guidelines

Advocacy

• To partner with the PES Public Policy Group to advocate for targeted PCOS diagnosis and co-morbidity screening for at-risk girls
• Partner with patient advocacy groups such as PCOS Challenge to increase awareness of PCOS in adolescents
• To advocate for medical coverage for contraception as a medical therapy for PCOS
• To educate patients and the public regarding the need for increased awareness and testing for PCOS and the availability of treatment options
• To support public health initiatives advocating a healthy lifestyle in an effort to mitigate metabolic co-morbidities for affected patients
• To support improved screening and treatment for mental health conditions associated with PCOS

NEXT STEPS (2-3 YEAR PLAN):

1. Form small groups to address each aim and identify specific projects that will be undertaken. We envision subcommittees within the SIG to address issues related to medical management, research, education, and advocacy.
2. Increase our visibility within the PES: Announce our formation on the website, promote membership in our SIG and solicit ideas for projects from the PES members.
3. Invite collaboration among translational research scientists and clinical researchers.
4. To foster collaboration with other well-established organizations such as AE-PCOS, Endocrine Society, NASPAG, and American Academy of Pediatrics to further advocate for medical coverage for children, public awareness, physician education in PCOS, and research funding.
5. Meet on a regular basis with quarterly telephone/video conferences and in-person meeting of members in conjunction with the annual PES conference.
6. Propose topics/ workshops/ MOC for the PES meeting agenda.