“Great to hear from you! Always love to hear from another PeriMeno advocate – pity so many of us become that through lack of awareness in our own journeys!”
Associate Professor Erin Morton
Erin’s initial comments when I reached out to learn more about her work and how we could collaborate. Well, here it is at long last! Our opportunity to be collectively heard and to help shape the way the medical and health profession provide support, care, and options during the Meno transition. I have submitted my response, and I am sharing this link and summary, so you can add your voice to the positive change that is happening this space. Thank you Erin for creating this research and asking us to be a part of it!
Launched on World Menopause Day, the new registry is called VITAL (Virtual registry of peri-/menopause in AusTrALia) and has a particular focus on exploring community priorities and creating tangible improvements in healthcare outcomes. It is designed to provide the perimenopause and menopausal community with greater opportunities for involvement in their own care, and critically to collect key data that can be used to identify trends and improve research and education for measurable improvements in women’s health.
Like most of us on this journey Associate Professor Erin Morton, unexpectedly started experiencing perimenopause, and quickly discovered how little awareness there was about this stage of life. She was concerned about the lack of knowledge and support available, and the impact of symptoms, costs and time commitments on daily tasks, employment, and family budgets.
“Three years ago, I realised I’d hit perimenopause, and I was rather horrified at how little was known or seemed to being done about it,”
Associate Professor Erin Morton
Erin’s further investigations and personal experience has led her to see that Meno “is an area of health that is so neglected and is still really stigmatised. There seems to be a lack of knowledge across healthcare roles, poor access to services, negative attitudes and lagging research to support women through this important time of life. There is very little information and support available, not to mention a lot of misinformation about hormone replacement therapy.”
Drawing on more than 20 years of clinical trial and health data expertise, Associate Professor Morton decided to take matters into her own hands and has created a registry that gathers information on Australians’ experience of perimenopause and menopause.
“VITAL is designed to provide the perimenopause and menopausal community with greater opportunities for involvement in their own care, and critically to collect key data that can be used to identify trends and improve research and education for measurable improvements in women’s’ health.
“I decided to create this community-driven registry to give a voice to the perimenopause and menopausal population; to define what peri really means, what really matters to them and its true – and hidden – impacts across the country”.
“I believe there should be more focus and funding on women’s lifelong health, and more attention made to improving their perimenopause and menopausal quality of life and subsequent health outcomes,” adds Associate Professor Morton.
The online registry is officially registered with the World Health Organisation (WHO) and the Australian Commission on Safety & Quality in Healthcare clinical trials and registry platforms. It has received cross-party recommendations in both Federal Houses of Parliament during Women’s Health Week recently.
VITAL is led by researcher Associate Professor Erin Morton who became interested in this area when she found herself part of the peri-/menopause community a few years ago and discovered how much more there is to find out and improve. As one of 13million current Australians born with ovaries, of whom 3million are in the most common peri-/menopause* age bracket of 40-59 years of age and being in the approximately 1million who experience symptoms that impact severely on daily life, she wanted to use her research experience to initiate a platform that could contribute to improvements for all.
How do I get involved I hear you ask?
Follow this link: http://bespokeclinicalresearch.com.au/vitalimpact/
Contributors are initially asked to take 5 minutes to tell us something about themselves and their understanding, opinions, and sources of information on peri/menopause (5 steps total). This will help us understand what their interest in peri/menopause is, and the best ways to improve peri/menopause communications nationally.
There are only 2 mandatory answers in all of VITAL, taking about 30 secs; if you answer stating that you’re in peri-/menopause then you’ll be asked additional “baseline” questions (21 steps total), and followed up with shorter questions 4 times a year to see if anything’s changed for you (until your experience stabilises post-menopausally or you ask us not to).
Depending on the information you choose to give, e.g. multiple ‘yes’ answers, additional details, and/or feedback suggestions on registry improvements, the questions could take anywhere from the original 5min to approximately 30 minutes.
Will my information be kept private?
Our VITAL registry database was developed specifically to the highest confidentiality and security standards by our platform partner, with the new national clinical registry guideline recommendations in mind (Australian Commission on Quality and Safety in HealthCare) and exceeding state health data security requirements. There are no pharmaceutical companies involved with the design or conduct of the registry.
Any data entered into VITAL is identified purely to the level the participant is comfortable with, and can only be utilized as: individually selected, authorized by an appropriate research ethics committee, and approved by the governing VITAL steering committee in both format and purpose.
THANK YOU!
The team at VITAL and every woman in Australia is grateful for any information that you can share about your journey. Your input will improve the way the medical and health systems recognise, understand, diagnose, treat, fund, and improve policies around perimenopause care in Australia.
Remember to please spread the word about VITAL to as many other women as you can.
