Turner Syndrome Study
PENS member Kelly Mullholand Behm, PhD(c), RN is currently conducting her doctoral dissertation study on the transitional experiences of 16 to 26 year olds with Turner syndrome (TS). She is seeking recruitment assistance from anyone who may see TS patients, who are 16-26 years of age, in their practice. The study uses a descriptive, qualitative, cross-sectional design with a theory driven thematic analysis to capture data that are representative of both late adolescents and young adults in the TS population. This study will provide in-depth information on what late adolescent girls and young adult women experience as they manage issues they perceive as important during this time of transition in their lives.The Rush University Institutional Review Board has approved recruitment assistance through pediatric and adult endocrine health care providers mailing the recruitment flyer to TS patients within their practice or databases, and by giving the flyer to TS patients seen for routine follow-up care. Interested patients will then contact Kelly Behm directly by phone or e-mail, and she will explain the study and obtain consent. Thus, you will not be providing any personally identifiable health information, and postage will be paid by Kelly upon request.Below are the Rush University IRB approved documents for your review:
Turner Syndrome Study IRB Approval LetterTurner Syndrome Study Recruitment FlyerKelly Behm is available to discuss the study in more detail by e-mail, kmbehm@earthlink.net, or by phone at 407-455-4986.
Turner Cognition StudyStanford University Hospital in California is recruiting Turner patients for an NIH funded Turner syndrome cognitive study.
Please refer any girls/ families that fulfill the following requirements:
- Girls 3-12 years of age
- 45, X or 46, XX mosaic
- Before estrogen has been started
Study will:
- Fly families to California and return flight home
- Will provide hotel accommodations for 2-3 days near Stanford University in Palo Alto.
Study testing includes:
- Functional MRI
- Neuropsychological studies
- Results and advice will be provided to families
Klinefelter Syndrome Study
PENS member Sharron Close is currently conducting her doctoral dissertation study on boys with Klinefelter Syndrome (KS). She is seeking recruitment assistance from anyone who may see KS patients in their practice. The study is being conducted at the Columbia University Medical Center in New York. It is IRB approved and has been funded by PENS.
The study is concerned with growth & development, body composition, hormones, metabolic and psychosocial health factors. To be eligible, boys must be between the ages of 8-18 years, be English-speaking and able to read at the first grade level. In the event an affected (47 XXY) boy is unaware of his diagnosis, non-disclosure will be maintained as per the parent wishes. Since we are measuring affected and non-affected boys, participants may not be aware of whether or not they are affected.
Each participant will receive a free medical exam, blood tests and a $25 American Express gift card for his participation. Parking will also be paid by the study. This study is currently underway. For more information, please visit our study website at