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Research Opportunities

This is a section dedicated to Research Opportunities for X and Y variations that will ultimately help researchers study our conditions.  The majority of the studies will not pay the participant.  Some may pay for travel and lodging and meals, however, it is important that we provide information and data.  A compilation of data will help scientists and researchers to learn more about the X and Y conditions that we have and share.  These studies are important and hopefully you can make contact with the various groups to provide your input.

STUDY TITLE: MyPaTH Story Booth Interview

STUDY BASICS:  Interested in sharing your story about health, illness, or research? Patients and caregivers are needed to participate in a research study.  This will help us learn more about topics that are important to you and that may improve health and health care. Participation involves one 45-minute session that takes place over the phone. Eligible participants must be able to read and understand English.

STUDY PURPOSE:  Understanding the experiences of patients, caregivers, and research participants are important as researchers work to develop new topics to study. The purpose of this study is to create an archive of the patient, caregiver, and research participant stories.  This will allow researchers to better understand people’s experiences with health, illness, coping, and the healthcare system. Researchers hope their findings will lead to the development of research studies that address topics that are important to patients and caregivers.

AGE: 18 and up


GENETIC VARIATIONS: All X & Y variations

VISITS: 1 phone call, no travel

DURATION: 45 minutes

LOCATION: By phone

COULD THIS STUDY BE RIGHT FOR YOU? · Ages 18 and up · Able to read and understand English

WHAT PARTICIPANTS CAN EXPECT:  Participation involves one 45-minute session that takes place over the phone. Participants will have a pre-interview survey, a 20-minute audio-recorded interview, and a post-interview survey.

DATE PUBLISHED: February 20, 2020

STUDY TITLE: BGAP Study Recruiting boys ages 8-17 with and without Klinefelter Syndrome

For more information about the BGAP study, follow this site.

To take part in this most important research study, follow this link.

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