Take Part in Research
Investigating the experiences of physically disabled people toward teleworking practices- 2021
Betsy Lake of Loughborough University is looking for lipoedema participants to help with her dissertation research project, ‘Investigating the experiences of physically disabled people toward teleworking practices’, located in the Social Model of Disability.
The Lipedema Foundation Registry
The Lipedema Foundation based in the USA now have an online registry (Lipedema Foundation Registry LFR) established to help our lipedema community, including affected individuals, families, clinicians, and researchers. Lipoedema UK encourage all our members, their families and friends to take part. It’s goals are to:
- learn more about lipedema
- understand barriers to diagnosis
- better manage symptoms
- assess quality of life impact
- develop new treatment approaches
– People with lipedema
– People who think they might have lipedema, and
– People who do not have lipedema (to use as comparison groups)
Participants under 18 must have an adult enroll in the registry on their behalf. The adult must:
– Be 18 years of age or older
– Be the parent, legal guardian, or other legally authorized representative of the participant
– Be willing and able to provide consent for the child under 18
– Obtain assent (agreement) from the minor participant, if they are between 13-17 years of age and are able to assent. Children under 13 are able to participate, although assent is not required.
Once a child turns 18, the Lipedema Foundation will contact the family and request that the participant provide his/her own consent to stay in the LFR.
Individuals from any country are welcome to participate in the LFR. Currently, the LFR is only available in English and participants must be able to read the consent and answer the surveys in English.
The Lipedema Foundation (LF) has developed an “Initial Survey” that should take approximately 60 minutes to complete. It will help provide direction for what types of research we should fund next.
To complete the survey please click on the image below. If you have any questions, comments or issues with the Registry – please contact Registry@lipedema.org.