MPN Information source for fellow information lovers

[Rachelthepotter]

Hi. This is a link to the MPN information kit put out by the MPN Research Foundation

Good stuff, and kept up to date.

Their main website has links to lots of current information, including the MPN Registry that they have just started where you can input your data over time - and decide who sees it.

Very helpful real person at the other end of the email address.

mpnresearchfoundation.org/M...

Regards

[Mazcd Partner MPNVoice]

To add to the above post, as announced at the living with day MPN Voice be opening the registry.

At present it does not fully comply with UK data protection and GSTT in collaboration with MPN Voice will make this available when appropriate.

You may all be interested to know that the registry was designed by Ruben Mesa, Srdan Verstovsek and Claire Harrison with Robyn Scherber.

[Rachelthepotter in reply to Mazcd]

Hi Maz

Hmm. There may be some confusion, because you can join the myMPN registry already. As you, the data subject, can choose in advance who sees your data, no legal data protection issues need arise. Its not like systems where an organisation collects data from you for one purpose and then passes it on to someone else without your say so.

There was some sort of genetic data collection system mentioned at the living with MPNs day in London as being in the pipeline ( but needing data protection clearance) - but that wasn’t the myMPN registry.

Anyhow, all will become clear.

No surprises that the “usual suspects” have designed the myMPN registry- and what an interesting and varied bunch they are. The talks Reuben Mesa and Srdan Verstoksek (sp?) gave at the San Antonio program ( and thanks again to Peter123456 for flagging it up) Link below if you missed it - are really worth watching.

mpnadvocacy.com/2018/03/vid...

All the best.

[Mazcd Partner MPNVoice in reply to Rachelthepotter]

Yes anyone can join the myMPN registry, which is collecting data for use by US clinicians and pharmaceutical companies etc, the data protection is not compliant with the UK data protection regulations, therefore anyone entering their data onto the US myMPN registry should be absolutely aware that the information they provide is not subject to the same regulations as here in the UK, and we would like to make people fully aware of this before they sign up to the registry and start entering their data.

You can read about the data capture and and how it is stored and being used with the US version of the registry via this link geneticalliance.org/program... you can also read more about it in the MPN Research Foundation newsletter spring 2017 edition.

The MPN Research Foundation is an excellent organization providing very good and accurate information.