Me & r(20) survey

On this page:

patient survey

Sign up to participate:

By sharing your experiences, you will contribute to making change happen.

NEW!! International Research Study on Support Needs

Initial results from our Living with r(20) Survey in 2023, tell us that r(20) has a profound impact on the lives of those diagnosed and the families who care for them. Final results are expected to be published later in 2024 (keep an eye on our social media and eNews).

Why are we doing this?

At Ring20, we realise that it is important to take a deeper dive into the differing support needs across family members, find out where you currently seek help, what works, and ask “what’s missing?” that would make a meaningful difference to your lives. By understanding your real-world experiences, we can signpost families to the most useful resources, whilst also highlighting any gaps in provision of information and services and what can be done to address them.

You ask, we listen

Will this benefit me/my child?

Ring20 will use the findings from this study to help shape our own information and support services, tailoring them where possible to try to address the gaps left by other providers to better meet your needs.

Who is eligible?

The study is open to all individuals and their families who are living with a ring chromosome 20 worldwide. You do not need to have participated in last year’s patient survey to take part in this study, and if you did take part in the survey, we would still like to hear from you.
Where possible, our Ring20 Champions may help conduct interviews in other languages including: French, Dutch, Italian, Portuguese, Japanese, Spanish, German.

What will I have to do?

Tell us you’d like to take part by completing the sign-up form on this page.

We will arrange for you to be part of a small focus group to discuss the impact of r(20). Group sessions will take place online (via Zoom) and will last for about an hour.
One to one sessions are available on request.

You can choose to participate as:

  • an adult aged 18 or over living with r(20) – with or without your parent(s) support
  • a parent(s)/carer(s) of someone living with r(20)
  • a sibling(s) of someone living with r(20) – parental support required for <18 years of age
  • a close family member involved in caring for someone living with r(20)

What information will I be asked to provide?

Prepare by thinking about your support needs:

  1. Your support needs: In what area(s) of daily life do you need most support? Are you able to get the help you need? Where do you receive help from?
  2. Barriers to  support: Do you face any barriers to accessing support? How do you think these could be overcome?
  3. What’s missing?: What would make a difference to you?
  4. Support and Information from Ring20: How does Ring20, the charity, help you?
    • What Ring20 services do you use?
    • What could Ring20 do to improve in future?

What will happen to the information collected?

We aim to publish a research paper on the support needs of all those impacted by r(20) and use this to evidence the unmet needs of our community.

Consent and Data Privacy

The information you provide will be treated with the utmost confidentiality. It will be used to help us update our support services and to help us fundraise, with anonymity protected. Your privacy will be protected, and no names will be used to ensure confidentiality and to comply with ethical guidelines. Please note that participation in this study is completely voluntary, and you have the right to withdraw at any time without providing a reason.

Want more information before you decide?

Contact your Ring20 Champion to ask any questions you may have.