You may complete this form as a patient yourself, or as the patient's representative e.g. parent/carer. You must ensure that you have the patient's permission to submit the information on this form to Ring20 Research and Support UK CIO, if the patient is over 13 years of age.
Ring20 Research and Support UK CIO will use the information provided to populate our r(20) map(s) and for its own statistical data gathering purposes on number of known cases of r(20) worldwide. Where opportunities for appropriate research arise, we will use this information to contact you to signpost you to provide you with the opportunity to participate.
If you indicate that you would like to be included on the r(20) PUBLIC map, we will include the patient as an anonymous marker in their region, to indicate prevalence of r(20) cases through our network of known members across the world. The PUBLIC map may be shared in our literature and at conferences/events.
If you indicate that you would like to be included on the r(20) PRIVATE map, we will include the patient's/patient representative's contact details to be made available only to other r(20) patients/families who have indicated the same, in order that r(20) patients/families may easily connect with each other through this network. You may also chose to send us a recent photo of the patient for inclusion on the PRIVATE map; if so please send to: firstname.lastname@example.org
You may update your preferences as to which map(s) to be included at any time.
, details provided herein will not be shared with any other parties outside of Ring20 Research and Support UK CIO without your prior consent.
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