How to set up a registry - the registries toolkit
If you are a patient organisation or specialist thinking of setting up a registry in a country where there is no TREAT-NMD registry or for a disease that TREAT-NMD doesn't yet address, this section is for you. Most of these efforts face many of the same challenges that we faced - such as legal and ethical framework, data protection, patient information and consent, professional involvement etc. By providing information about how we addressed some of these questions ourselves, we hope to facilitate and harmonize these efforts.
If you are interested in setting up a registry to link with the TREAT-NMD global registry, we would very much like to hear from you. Please contact Hanns Lochmüller, who will be able to provide further advice and support.
You may also find the documents below provide a useful starting point.
For a DMD registry to be compatible with the TREAT-NMD global registry, it must contain the items listed here.
For an SMA registry to be compatible with the TREAT-NMD global registry, it must contain the items listed here.
Any national registry wishing to become part of the TREAT-NMD global registry must adhere to this Charter.
- A handbook on DMD genetics - guidelines for national curators on the mutation entries in DMD databases.
Pilot forms for patient self-report database
The forms here were produced for the UK SMA registry, which is a joint collaboration between TREAT-NMD and the patient organisation The Jennifer Trust. Much of the information they contain will be applicable to any patient registry.
- Registry protocol
- UK ethics approval application form
- Consent form
- Self-report form
- Instructions for self-report form
- Patient information on TREAT-NMD
Web application for an internet-based self-report registry
The SMA registry in the UK and the German SMA and DMD patient registries will be based on a web application currently being developed at the Munich University Hospital. The software, which is based on the Java Enterprise Edition platform, offers a user-friendly interface for patients enabling them to directly enter and modify their own data online. If you are considering launching a similar registry and would like more details about this software, please contact Hanns Lochmüller.
First registries training meeting - Montpellier, November 2007
At the end of last year the first training session for those involved in all the national registries linked to the TREAT-NMD global registry took place in France. Links to some of the training materials are provided below.
Opening comments from Mireille Claustres and Kate Bushby
Introduction to INSERM Mireille Claustres
TREAT-NMD Registries Introduction Kate Bushby
Presentation: TREAT-NMD database – charter, objectives, legal and ethical
conduct, access rules, third party involvement (Hanns Lochmüller)
TREAT-NMD Databases Hanns Lochmuller
Training session No 1: Genetic items (Sylvie Tuffery-Giraud)
Training Session 1 Sylvie Tuffery Giraud
Training session No 2: Clinical mandatory items (Véronique Humbertclaude)
Training Session 2 Véronique Humbertclaude
Training session No 3: The UMD software (Christophe Béroud)
Training Session 3 Christophe Beroud
