Event Details
Agenda
Event Details
Meeting Summary
Meeting Purpose
To Define the Research Needs for improving the quality of care provided for adolescents/young adults with complex chronic conditions involving the genitourinary systems as they transition to independence and the adult health care delivery system.
Meeting Description
This one day meeting will bring together patients, caregivers, social workers, behavioral, nursing and medical experts who provide care for adolescents and young adults with complex chronic conditions involving the genitourinary systems. The majority of the time will be spent in breakout groups with the goal of broadly defining the research needs that will lead to improved quality of health across the lifespan.
Faculty
View a list of faculty (DOCX, 19.77 KB) .
Agenda
February 2, 2015
- 8:00 a.m.
- Welcome
Robert Star, M.D.
- 8:10 a.m.
- Background
Tamara Bavendam, M.D., M.S.
Invited Presentations - Setting the Stage
- 8:25 a.m.
- Transitions and Adult Health Care: Perspective of Individuals with Spina Bifida
Meezan Ford and Twila Hunt
- 8:45 a.m.
- State of Transition Care for GU patient is US
Hadley Wood, M.D. , F.A.C.S.
- 9:00 a.m.
- Historical Perspective of Transitional Urology
Dan Wood, Ph.D. F.R.C.S.
- 9:15 a.m.
- Engaging the Unengagable – Male Adolescent Health
David Bell, M.D., M.P.H.
- 9:30 a.m.
- Intellectual Disability/Developmental Disability and Transition
Nienke Dosa, M.D., M.P.H.
- 9:45 a.m.
- Self-Management – Key to Successful Transition
Kathleen Sawin, Ph.D., C.P.N.P.-P.C., F.A.A.N.
- 10:00 a.m.
- Break
Breakout Session 1 – Condition Orientation
- 10:15 a.m.
- Spina Bifida
- Group 1: Spina Bifida: Reproductive Health (Sexual Function, Fertility)
Moderators: Melissa Kaufman, M.D., Ph.D., and Naida Kalloo, M.D.
- Group 2: Spina Bifida: Nonurologic Contributors to Transition (Executive Functioning, Psychology, Pain, Mobility)
Moderators: Brad Dicianno, M.D., and Peter Scal, M.D., M.P.H.
- Neuropathic bladder (including Spina Bifida) and Exstrophy
- Group 3: Neuropathic Bladder and Exstrophy: Lower Urinary Tract and Bowel Dysfunction
Moderators: Rosalia Misseri, M.D., F.A.A.P., and Dan Wood, Ph.D., F.R.C.S.
- Group 4: Neuropathic Bladder and Exstrophy: Nephrologic/Metabolic Issues
Moderators: Tej Matoo, M.D., D.C.H., F.R.C.P. (UK), F.A.A.P., and Clare Close, M. D.
- Genital Disorders
- Group 5: Male Genital Issues (Cosmesis, Urinary Function) and Reproductive Health (Sexual Function, Fertility)
Moderators: Hadley Wood, M.D., F.A.C.S., and Michael Hsieh, M.D.
- Group 6: Female Genital: Reproductive Health (Sexual Function, Fertility)
Moderators: Veronica Gomez-Lobo, M.D., and James Wright, M.D.
- 12:00 p.m.
- Lunch
Breakout Session 2 – Research Domain Orientation
- 1:00 p.m.
- Group 7: Epidemiology (Cross-sectional and Longitudinal)
Moderators: Enrique Schisterman, Ph.D., M.A., and Michael Hsieh, M.D.
- Group 8: Outcome Measures (What do we have and what do we need?)
Moderators: Tamara Bavendam, M.D., M.S., and Rosalia Misseri, M.D., F.A.A.P.
- Group 9: Clinical Care (What should health care professionals be doing and when?)
Moderators: Hadley Wood, M.D., F.A.C.S., James Wright, M.D. and Clare Close, M. D.
- Group 10: Self-Determination and Self-Management of Chronic Disease (Empowering Patients to Take Appropriate Responsibility)
Moderators: Kathleen Sawin, Ph.D., C.P.N.P.-P.C., FA.A.N., Neinke Dosa, M.D., M.P.H., and Naida Kalloo, M.D.
- Group 11: Health Care Infrastructure and Training Issues
Moderators: Peter Scal, M.D., M.P.H., Brad Dicianno, M.D., and Melissa Kaufman, M.D., Ph.D.
- 2:15 p.m.
- Break
- 2:30 p.m.
- Breakout 2 Report Back
Group Representatives
- 3:20 p.m.
- Creating a Research Agenda
Group Discussion
- 3:55 p.m.
- Meeting Summary
Marva Moxey-Mims
- 4:00 p.m.
- Adjournment
