Last year many of you very kindly completed the Sight Loss and Vision Priority Setting Partnership survey and following this we have now received a short list of a number of “uncertainties” to consider. We want to know which 10 “uncertainties” are most important to you. Please see below, ( or – Inflammatory FORM A_James Lind Alliance Sight Loss and Vision Priority Setting Partnership). This is your chance to influence the direction taken by eye researchers on our behalf.
| No. | |
Detection, Diagnosis and Monitoring
|
|
| 1 | How can we screen for the early symptoms of Behcets disease? |
| 2 | How can we ensure early detection of birdshot retinopathy? |
| 3 | What is the most effective way to monitor birdshot retinopathy? |
| 4 | What are the long term impacts of current monitoring regimes for people with birdshot retinopathy? |
| 5 | How can we predict how severe birdshot retinopathy will be in an individual? |
| 6 | How often should tests be run for ongoing, chronic uveitis and is current monitoring safe? |
| 7 | How can we develop a genetic test for Graves’ eye disease? |
| 8 | How can we improve early diagnosis, including self diagnosis, of thyroid eye disease/Graves’ eye disease? |
| 9 | Could biomarkers be used to track disease progression in thyroid eye disease? |
| 10 | How can thyroid orbital vascular congestion (treated by surgery) be differentiated accurately from thyroid orbital inflammation (treated with immunosuppression) in the clinic? |
| 11 | Are we able to predict the severity with which thyroid eye disease may develop? |
| No. | |
Cause and Prevention
|
|
| 12 | What causes birdshot retinopathy? |
| 13 | What role do genes play in causing birdshot retinopathy? |
| 14 | Can dietary measures, nutritional factors or complementary therapies prevent birdshot retinopathy? |
| 15 | Can environmental or lifestyle factors trigger birdshot retinopathy? |
| 16 | What is the relationship between birdshot retinopathy and other auto-immune diseases? |
| 17 | Why is birdshot retinopathy mainly a Caucasian disease? |
| 18 | Why are only the eyes affected for people with birdshot retinopathy? |
| 19 | What causes thyroid eye disease? |
| 20 | Can diet or lifestyle changes prevent thyroid eye disease? |
| 21 | Can thyroid eye disease be triggered by environmental factors? |
| 22 | How does smoking tobacco affect the eyes of people with hyperactive thyroid/Graves’ eye disease? |
| 23 | Which patients with Graves’ disease are at risk of developing thyroid eye disease? |
| 24 | Why do some forms of orbital inflammation cause extreme scarring with loss of vision? |
| 25 | What causes scleritis? |
| 26 | Can diet or lifestyle changes prevent uveitis from developing? |
| 27 | Why does acute anterior uveitis tend to be unilateral and recurrent? |
| 28 | Why does disease burn out in patients with uveitis? |
Treatment |
|
| 29 | What medications best prevent the development of eye disease in Behcets? |
| 30 | Can we improve the identification and treatment of optic neuritis for people with Behcets disease? |
| No. | |
| 31 | What is the impact of sleep deprivation / tiredness on the progression of birdshot retinopathy? |
| 32 | Can we find a treatment for birdshot retinopathy that doesn’t have side effects? |
| 33 | Can dietary measures, nutritional factors, supplements such as Vitamin D or complementary therapies prevent the progression of birdshot retinopathy? |
| 34 | What is the role of helminthic therapy, a type of immunotherapy, in controlling or treating birdshot retinopathy? |
| 35 | How effective are current treatments for birdshot retinopathy? |
| 36 | How can we reverse the damage to the eyes caused by birdshot retinopathy? |
| 37 | Why do some medications work for some and not for others with birdshot retinopathy? |
| 38 | What is the relationship of HLA A29 gene to treatment of birdshot retinopathy? |
| 39 | Could the telescopic implants used for macular degeneration work for people with birdshot retinopathy? |
| 40 | How can we ensure proportionate treatment for birdshot retinopathy according to severity of disease? |
| 41 | What is the safety and effectiveness of calcineurin inhibitors for the treatment of birdshot retinopathy treatment? |
| 42 | What is the safety and effectiveness of oral steroids compared to injected steroids into the eyes for birdshot retinopathy treatment? |
| 43 | Can we develop less aggressive treatments for progressive outer retinal necrosis? |
| 44 | Can we develop a stem cell treatment for people who have lost sight due to progressive outer retinal necrosis? |
| 45 | Can we develop non-immunosuppressive treatments for scleritis? |
| 46 | Can we develop a cure for thyroid eye disease? |
| 47 | What is the most effective treatment for thyroid eye disease? |
| 48 | Can we develop new treatments without harmful side effects for thyroid eye disease? |
| 49 | Can dietary measures, nutritional supplements, lifestyle changes or complementary therapies influence the impact of thyroid eye disease? |
| 50 | Can smoking cannabis decrease the symptoms of hyperactive thyroid/thyroid eye disease? |
| 51 | Can improvements in treatments for thyrotoxicosis reduce the risk of thyroid eye disease from developing? |
| 52 | How can we improve surgical treatment for thyroid eye disease? |
| 53 | What is the best treatment for optic neuropathy in thyroid eye disease? |
| 54 | What is the link between the antibodies which affect the thyroid in Graves’ disease and thyroid eye disease, and could this information be used to develop a treatment? |
| 55 | In people with thyroid eye disease, is there some way to remove whatever it is that prompts the immune system to target the eye muscle cells? |
| 56 | Should smokers who are undergoing radioactive iodine treatment for hyperthyroidism receive prophylactic steroids? |
| 57 | Should early orbital decompression be considered for patients with active thyroid eye disease? |
| 58 | How can the use of prisms in spectacles be made more effective to help double vision caused by thyroid eye disease? |
| 59 | Is it possible to prevent further occurrences of retinal damage caused by toxoplasmosis? |
| 60 | Is it possible to reverse the retinal damage caused by toxoplasmosis? |
| 61 | Do antibiotics actually affect the course of toxoplasma retinochoroiditis? |
| 62 | Can we develop treatments for uveitis that don’t involve steroids? |
| 63 | How can we cure any forms of uveitis such as iritis, birdshot retinopathy? |
| 64 | What are the most effective treatments for uveitis? |
| 65 | How can uveitis in children be managed, to reduce the long-term risk of blindness? |
| 66 | What are the risks and benefits of vitamin supplements for autoimmune diseases of the eye? |
This partnership will, for the first time, identify the most pressing questions about the prevention, diagnosis and treatment of sight loss and eye conditions. The aim is to ensure that future research can be prioritised according to the needs of patients, their partners, relatives and carers and eye health professionals.
BUS will be attending a meeting with Fight for Sight in April to discuss this so it is important to know what you think is most important.
You can tell us and we will compile the answers and present the for the society, or you can Fill in the form that your find here:- Inflammatory-FORM-B_Interim-Ranking-Form.doc and send it off to Fight for Sight at the address given at the end of the form.
Please complete and return the Form to Fight for Sight by 28 March 2013.
If you have any questions, please do get in touch with us.
Many thanks
Annie, John, Peter and David
BIRDSHOT UVEITIS SOCIETY