Most people in the PWS Community will agree to the need for furthering research into finding new treatments and therapies to help alleviate the many symptoms of PWS. However there are also various reasons why people feel they can’t be involved in the research process. Maybe it’s location, age of participants needed, worry about trying a new drug, lack of trials in the particular area that you desperately want there to be, or even sometimes that you just aren’t aware what trials are open.
But there is a way that we can all be involved.
At any time.
From your sofa, the bus or even the beach!
The Global PWS Registry is an amazing resource that gives every person or caregiver of someone with PWS a voice- a voice that counts towards shaping current and future research. A voice that creates a whole, global and diverse picture of PWS and can be used to support medical diagnoses and treatment of PWS across the world.
The Registry was created in 2015 and information stored is anonymous. The Registry helps to guide areas for future research and saves time in the research process by having a wealth of data from people with PWS available right from the start.
It’s all done online through surveys that gather information about PWS symptoms and experiences from participants all over the world. You may have seen FPWR’s infographics on various areas of PWS showing things such as the percentage of people with PWS who have vision issues, or the ages where mental health issues are most prominent. These can be useful for medical professionals, or also for caregivers who are trying to demonstrate a certain area of need they have to a medical expert. For example you could show your medical team the infographic on scoliosis to support up your request for early X-rays if you’re having trouble convincing other professionals they are necessary without visual signs of scoliosis.
It is also a really valuable personal tool to return to and see what progress or changes there have been for you or your loved one with PWS over time. It’s recommended that once you have filled in your initial batch of surveys, that you return annually to update them or fill in any new surveys that may now be applicable to you. This is really interesting to look back on and see where your own PWS journey has been and is now.
Data from 2021 showed that 29% of participants on the Registry have also taken part in clinical trial themselves. However everyone on the Registry is assisting research just by filling in the surveys and putting their experiences out there to be counted. It’s something we all can do to get our story across and an easy way that we can be involved in creating a better future for everyone with PWS. So sign up or update your surveys now at https://pwsregistry.org. Your story matters.
Written by Angie Saunders