Patient registries play an important role in identification of patients for clinical trial feasibility and recruitment. They can also provide invaluable information about the natural history of a disease and can contribute to the formulation of standards of care guidelines.
The Global Registry for COL6-related dystrophies is a dual entry database meaning that, with the consent of the patient, information is provided by both the patient and the professionals involved in the patient’s care. Doctors will only be able to see their own patients’ data. Information entered by a doctor for a patient can can be viewed by the patient on request.
The questionnaire should take around 20 minutes to complete once you have the required information to hand. An example questionnaire can be found here.
Information should be updated annually and an email reminder will be sent to prompt you to do this.
If you are a doctor who is not currently involved with the registry but who sees patients with COL6-related dystrophies then we would encourage you to contact the curator (Lucy Imber, Lucy.Imber@newcastle.ac.uk) to discuss adding you to the Registry.
Please help us spread word about the registry to the patient community by directing them to this website or by distributing our trifold leaflet (please contact the curator if you would like some printed materials). Some information which highlights the importance of joining a registry can be found here: Why join a patient registry?
This study was approved by the Faculty of Medical Sciences Research Ethics Committee, part of Newcastle University’s Research Ethics Committee. This committee contains members who are internal to the Faculty, as well as one external member. This study was reviewed by members of the committee, who must provide impartial advice and avoid significant conflicts of interests.
Other approvals held by the registry:
- Newcastle upon Tyne Hospitals (NUTH) Caldicott approval (ID:6514).
- Favourable ethical opinion from NHS Health Research Authority Research Ethics Committee, United Kingdom (REC reference 18/NE/0243).
- Management Review Letter of No Objection (R&D ref: 8451), Newcastle Joint Research Office, Research and Development, The Newcastle upon Tyne Hospitals NHS Foundation Trust.
- Favourable ethical approval from The Royal Children’s Hospital Melbourne Human Research Ethics Committee (RCH HREC 38302)
- Governance authorisation at the Melbourne Children’s Campus.
Registered clinicians can access the Clinician Portal here