This toolkit provides some information and examples to help you get started. This is just a guide and it is often beneficial to contact other curators to find out more about how registries function. Many are listed under registry listings or you can contact TREAT-NMD for more information.
The information here is relating to self-report registries but you may still find it useful if establishing a clinician led database.
Here are links to example documents you may find useful when preparing applications for funding or for ethical approval. They are all based on documents which are being used in registries at the moment. You are free to use them but please adapt as needed to meet your situation.
Mandatory sets and associated workshop reports*
- Duchenne Muscular Dystrophy
- Facioscapulohumeral muscular dystrophy
- Myotonic Dystrophy
- Spinal Muscular Atrophy
This is an example research protocol that can be used in applications for funding and ethical approvals.
These can also be designed for parents and patients of different age ranges. It is important that people are well informed before agreeing to participate in a registry.
Informed consent is an important part of research and is important even a for a straight forward registry. Parents can normally consent on behalf of children who are under 18 years of age. Check with local governing bodies for more advice on this.
Disclaimer: These documents are only intended to be used as a guide to the type of information that may be required by a registry. They will need to be tailored to the specifications of each registry taking into account any information required by specific diseases and countries.
* where available