How to register

Registration Instructions (Leaflet)

A leaflet explaining the registration process.

Privacy and GDPR


Study Documents

For participants registered after 01/05/2018

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 16 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 16

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 16. 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 16 and who have a rare disease. The child's parent or guardian must also sign a consent form.

Study Documents

For participants registered before 01/05/2018

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 16 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.

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 totake 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 16

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 16. The child may also sign an assent form.

Assent form for Children

This version is intended for participants who are under the age of 16 and who have a rare bone disease. The child's parent or guardian must also sign a consent form.

Blood and urine sub study


MITO-PROM Information