GDPR Documents


How to register

Registration Instructions (Leaflet)

A leaflet explaining the registration process.

Study Documents (after 01/05/2018)

For participants registered after 01/05/2017

Participant Information sheet

The participant information sheet details what participation in the RUDY study will involve for you as a participant. Please select the relevant version for your age category. We require that every participant reads the Participant information sheet before signing up for the study, and for participants under 18 their parent/legal guardian must read the Parent/Guardian information sheet.

Participant Information sheet for Adults

This version is designed for all readers aged 16+

Participant Information sheet for Parents / Legal Guardians

This version is intended for all parents and legal guardians.

Participant Information sheet for Children aged 11-15

This version is designed for all readers aged 11-15 years.

Participant Information sheet for Children aged 6-10

This version is designed for all children aged 6-10 years.

Participant Information sheet for Children under 6 Years

This version is designed for all readers aged 5 years or less.

Participant Information sheet for Unaffected family members

This version is for unaffected family members and relatives

Consent Forms

It is up to you to decide whether to join the RUDY study. The Participant Information Sheet will explain the study to you. If you would like to take part in the study after reading the Participant Information Sheet and speaking with a member of the RUDY team we will ask you to sign a Consent Form and return the signed Consent Form to us.

From the list below please select the relevant Consent Form version for your age group. Every participant or participant parent/guardian will go through the Consent Form with a member of the RUDY team during the telephone appointment. Please make sure you have read the appropriate Consent Form before your telephone appointment.

Consent form for Adults

This version is applicable for participants who are aged over 18

Consent form for Parents / Legal Guardians of a Child

This version is intended for the parents or legal guardians of participants who are under the age of 18. The child may also sign an assent form.

Consent form for Unaffected relatives

This version is applicable for unaffected family members and relatives

Assent form for Children

This version is intended for participants who are under the age of 18 and who have a rare bone disease. The child's parent or guardian must also sign a consent form.

Papers

Quality of Life

Using the RUDY study platform to capture quality of life of adults with rare diseases of the bone: Preliminary findings

L Zhang, R Pinedo Villanueva, MK Javaid Oxford NIHR Musculoskeletal BRU, NDORMS, University of Oxford

The development of new treatments for rare bone diseases is urgently needed. Assessing a patient’s health-related quality of life is useful for determining if a treatment is beneficial and cost effective. The EQ5D-5L is a questionnaire recommended by the National Institute for Clinical Excellence (NICE) for evaluating quality of life.

The quality of life for adults with rare bone diseases is currently poorly understood. Therefore we compared quality of life for adults with three rare bone diseases- osteogenesis imperfecta (OI), fibrous dysplasia (FD) and X-linked hypophosphatemia (XLH), using the EQ5D-5L questionnaire.

A total of 51 participants from the UK completed the questionnaire. We found overall a wide variation in quality of life scores. The majority of participants reported pain and discomfort to be significant problems in their lives. When comparing the three diseases, those with FD reported more anxiety and depression than participants with OI and XLH. Participants with XLH reported a better overall quality of life score. These initial results suggest a wide range of quality of life amongst adults with OI, XLH and FD. We hope a better understanding of health-related quality of life in this population will help guide the development of new treatments and funding for patient services.