Interesting Research news for people with Behc... - Behçet's UK

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Interesting Research news for people with Behcets Disease

andreafm profile image
6 Replies

This information came from the American behcets Disease Association whose website is on behcets.com

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Researchers at Keck Graduate Institute (KGI) in Claremont, California, are studying serum samples in an attempt to identify and characterize new diagnostic biomarkers of cells, proteins and or nucleic acids of rare diseases. The study is funded in part by a grant from the National Science Foundation.

The National Organization of Rare Disorders (NORD) is a partner and plays and advisory role. The project is designed to provide a better understanding of the similarities and differences in patients of rare disease populations and to ultimately help select specific forms of treatment. Healthy family members may participate as part of the control group.

At this time, the study is recruiting Behcet's patients and their healthy family members living in the United States. Serum samples from Behcet's patients will be obtained during the course of the patient's next routine lab work procedures as scheduled through their primary physician. The samples will then be sent to the KGI lab in California, at no cost to patients.

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I am not sure if we have anyone here on the forum from America but obviously this would benefit us all in the future if they can find a diagnostic test for behcets.

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andreafm
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UKADMIN profile image
UKADMINPartnerBehcet's Syndrome Society

This is similar working going on at the Hammersmith hospital under Prof Haskard the Society called for volunteers about a year ago and whilst the take up was limited we hope the results will prove a step forward

tamirra profile image
tamirra in reply toUKADMIN

Myself being the healthy participant and my daughter the ill party have both been involved in the Hammersmith trials with no cost to us, we were so glad to be of some use.

Sunset profile image
Sunset

Hi Andrea;

Behcet's patients do research on the United States and it is difficult to try new drugs in humans. On the subject, such as the FDA does not allow the rules are very strict. Andrea has recently been the treatment of disease, get rid of this pain and suffering together. A little patience.

Hope to be your good days;

andreafm profile image
andreafm

Thank you sunset....I am from the UK so although this was research in America I thought it might be interesting....this is guided towards disgnosis which if found to be positive, will mean that many people will no longer have to endure the added pain and suffering of trying to find appropriate consultants and treatment.

Tamirra and Sinnita, that is excellent news and thank you for giving your time up for this badly needed research.

Lets hope it produces some good news

Andrea

tamirra profile image
tamirra

Thank you Andrea, it was a long day and slightly uncomfortable but wasn`t painful, but we didnt mind at all as we just hope more come forward to do the same. x

SuenMike profile image
SuenMike

About 10 years ago I took part in a series of tests to see if there was a serum related marker for BD at Addenbrookes Hospital in Cambridge. The doctor who was carrying out these subsequently moved to Hammersmith Hospital. I never found out if the results of the tests were helpful or not.

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