Solve biobank recruiting patients and healthy controls

[Sasha]

Roll up!

The SolveCFS Biobank and Patient Registry is recruiting ME/CFS patients and healthy volunteers who are willing to donate biological samples and provide health information to support our scientific research.

Researchers use our Biobank to understand the progression of the disease and investigate targets for new therapies.

Scientists also compare samples from healthy volunteers with those of patients to explore how and why ME/CFS develops and identify genetic risk factors.

To find out more or enroll, go to

http://solvecfs.org/biobank/?utm_co...l&utm_source=facebook.com&utm_campaign=buffer

http://bit.ly/1LNBVb1

 

[jimells]

I've done my duty. There is no mention of whether they only want US residents, but there is a box on the contact form for "Country". Since they are only collecting data and no samples until researchers actually need them, I don't see any obvious reason to limit this to US residents.

 

[*GG*]

I signed up for this again. I would really like to be included this time!

GG

 

[Bob]

They welcome international contributors/participants. I'm in the UK and I signed up.

 

[Sasha]

They welcome international participants. I'm in the UK and I signed up.

Have they said so? I had a quick look yesterday and couldn't see anything. I thought they were purely a biobank and just wanted good info on people who could provide bio specimens - and assumed that they'd want the specimens sent to the US.

 

[Bob]

I thought they were purely a biobank and just wanted good info on people who could provide bio specimens - and assumed that they'd want the specimens sent to the US.

Yes, that's correct. In case I've caused confusion, when I said "participants" I meant "contributors" to the biobank.

Edit: See @jimells' post, below.

They welcome international contributors/participants. I'm in the UK and I signed up.

Have they said so? I had a quick look yesterday and couldn't see anything.

Yes, they've said that they welcome international participants. I don't know where it's written - I signed up a couple of years ago.

Note, as far as I understood it, international contributors have to arrange for any samples to be collected and sent privately; They give you instructions about how to do this. To begin with, they just ask you to complete forms online, and you don't send samples until a researcher requires your specific samples. I had to drop out when my health deteriorated and so I haven't had contact with them for a while, so things might have changed.

 

[jimells]

I thought they were purely a biobank and just wanted good info on people who could provide bio specimens - and assumed that they'd want the specimens sent to the US.

It's not really a "biobank" but rather a database to be made available to researchers. Since samples aren't collected until the researchers need them, I assume they will be shipped directly to the researchers or whatever lab is handling samples for them. So if a UK researcher uses this database, there would be no reason to ship samples to the US. Certainly Solve would not want the samples sent to their office!

 

[Bob]

Who can participate?
Everyone – Those with ME/CFS and the people who care about them. Anyone 10 years of age or older are eligible to participate.

http://solvecfs.org/biobank/

Who can participate in the SolveCFS BioBank & Patient Registry?
Anyone age 10 years and older can participate in the SolveCFS BioBank. The SolveCFS BioBank & Patient Registry has been built to be a robust resource for ME/CFS research. For this reason it is best that patients have a ME/CFS diagnosis from a healthcare provider. We also invite the family and friends of ME/CFS patients to participate. Family and friends are very important because it helps us understand what is different and possibly causing ME/CFS.

http://solvecfs.org/solvecfs-biobank/eligibility/

 

[jimells]

I asked Solve what countries and here is their reply

Hi Jim,

Thank you for reaching out to us. Those living outside of the US are invited to enroll and are always able to participate in the patient registry. It may be some time before we request a biological sample abroad but the medical information gathered in the registry is of great value and an excellent resource for researchers.

Kindest regards,

Veena M. Manohar
BioBank Coordinator
VManohar@SolveCFS.org
704-364-0016 Ext. 204