Quality of Life Research Study for Individuals with MRKH (IRB-Approved)

A research team at Texas Children’s Hospital – Baylor College of Medicine led by Dr. Niccolo Passoni are conducting a study focused on understanding the lived experiences, psychosocial needs, and support preferences of individuals with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome.

They are currently distributing an anonymous survey designed to better understand:

  • Experiences surrounding MRKH diagnosis
  • Interactions with healthcare providers
  • Access to emotional, psychological, and educational support
  • Experiences with peer and support-group engagement
  • Patient perspectives on unmet needs and future resource development

Their goal is to identify gaps in care and improve patient counseling, multidisciplinary support, and educational resources for individuals with MRKH and their families.

The survey:

  • Is anonymous and voluntary
  • Takes approximately 20–30 minutes to complete
  • Is open to individuals age 13 years and older with MRKH, as well as family members/caregivers of individuals with MRKH

Survey Link

Do I have to participate?

Not at all.  This is a completely elective and voluntary research, MRKH Connect are not requesting anyone to participate merely sharing the opportunity.  There is no obligation to take part and you can also choose to remain completely anonymous and back out at any time.

If you have any questions you can also reach out to Dr Passoni directly – NiccoloMaria.Passoni@bcm.edu

MRKH Connect have had the pleasure to discuss directly with Dr Passoni and team.  We believe in the value of research to better understand, inform and improve services to our community and beyond which is where we believe research topics like this can be of interest to others, and why we share them.