Do you want to be involved in MRKH research?
In 2014, the Sisters for Love MRKH Foundation formed a research partnership with the University of Queensland to conduct a pilot study to identify the genetics responsible for MRKH, following an approved submission for research funding. This funding has been further extended to continue with this research heading into 2018.
Over the recent weeks, we as the Sisters for Love founders, have been involved in a number of discussions with Professor Peter Koopman. Professor Koopman is in the Division of Molecular Genetics and Development at the Institute for Molecular Bioscience, University of Queensland.
The study will be conducted confidentially, with the approval of the UQ Human Research Ethics Committee, and in accordance with the Australian Code for the Responsible Conduct of Research. We aim collectively, to recruit approximately 13 women and their parents in the state of Queensland to be part of this research, collecting a 10ml blood sample by registered nurses or medically qualified doctors.
Professor Koopman is nothing short of passionate when it comes to research in this field and remains so inspired to assist in the research and genetics of the MRKH Syndrome. At this stage, we are looking to collect the names of interested parties however, we will update all participants with information at each stage of the process. With more people stepping forward to take part, the more funding can be requested throughout the study and in the future.
If you wish to be involved with this study, please may I ask you to email firstname.lastname@example.org where further documentation and information will be released.
- Ally and Jaqi
The Beautiful You MRKH Foundation, along with Global MRKH and Sisters for Love MRKH Foundation, is pleased to showcase some of the results from the recent survey you just completed! This project is part of a larger effort led by these three organizations to improve care for all affected by MRKH. We presented these results on April 21st, 2017 at an MRKH workshop at the North American Society for Pediatric and Adolescent Gynecology (NASPAG) Meeting in Chicago, IL, USA.
This was the first workshop to bring together affected individuals, parents, mental health professionals and clinicians who primarily treat people with MRKH to discuss gaps in care for MRKH. We focused our discussion on ways to improve diagnosis, treatment, access to qualified mental health care practitioners, and sexual health. The outcomes from this workshop will be used to identify potential comparative effectiveness research questions that can be addressed in future research studies. We look forward to sharing the complete results of this survey in the coming year, and stay tuned for additional ways YOU can help improve patient care for all affected by MRKH!
We would like to introduce you to the team that produced the survey:
Amy C. Lossie, PhD Principle Investigator/Project Lead
Ally Hensley Survey Team Lead
Susan Carroll, MSc Survey Team
Kristy Siiankoski, GD-SXLGY Survey Team
Kristy Zieman, MS Survey Team
Kristen Peterson Social Media Team Lead
Jaclyn Misch, MA Social Media Team
Christina Ruth Social Media Team
Funding for this project was provided to the Beautiful You MRKH Foundation, in part, by the Patient-Centered Outcomes Research Initiative (PCORI), Pipeline-to-Proposal Award (5134284), administered on behalf of PCORI by the National Network of Public Health Institutes. Additional funding was provided by the JC Foundation and through private donations.
Building an Empowered Patient Community:
Tackling Health Care for All Affected by MRKH