Data Collection
We Need Your Help!
The Registry is populated with information through the contributions of various people from around the world. These individuals have established expertise in relevant outcome measures; having either developed them or used them in their work/research. So, if you have expertise pertaining to an outcome measure that was developed for or is potentially applicable to neuromuscular disease, we'd like to hear from you...
How Can You Help?
Adding a Stage 2, 3 or 4 Record!
Records are entered into ROM using an on-line form. This may take as little as 15 minutes for a stage 2 record, up to an hour or two for more comprehensive records (i.e. stage 3, 4). If you have the necessary knowledge we welcome all contributions, be they:
* the creation of new records;
* supplementation of existing records; and/or
* identification of potential errors for investigation and correction.
Adding a Stage 1 Record
If you are pushed for time you may still be able to help. A stage 1 record only requires 3 pieces of information:
- Official Name of the OM (plus abbreviation if applicable);
- A brief description of the OM (e.g. A functional scale designed for use in SMA Type I); and
- A source reference (i.e. key reference, validation reference, or official website).
To make it even simpler, you can email the information to the Registry Co-ordinator and they will enter the information for you.
Decided To Help?
Excellent – welcome aboard!
If you would like to register to provide details for an Outcome Measure please complete, sign and return the ROM User Account Request form. Once you have completed and signed the form, return it to the Registry Co-ordinator by:
- email (scanned copies or those with electronic signature are acceptable);
- fax [+44 (0) 203 299 8504, marked to the attention of Joanne Auld]; or
- mail [see address below].
Joanne Auld
Registry Co-ordinator
c/- Office of Dr Michael Rose
Room 91.23, 9th Floor, Ruskin Wing
King’s College Hospital
Denmark Hill
SE5 9RS