ClinicalTrials.gov is a service of the National Institute of Health. ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

Learn what studies are underway for your disorder. Search for studies by condition or geographic location. There are thousands of clinical studies being conducted for various eye diseases. There are 550 studies just for Macular Degeneration and another 41 for Retinitis Pigmentosa.

http://clinicaltrials.gov/ct2/home

Several studies have been reported throughout the world on the use of Acupuncture to treat wet and dry Macular Degeneration, Glaucoma, Stargardt’s  and Retinitis Pigmentosa. The acupuncture was done with and without electrical stimulation.

http://www.acudoctor.com/Results.htm

http://www.microacupuncture.com/

http://www.acudrved.com/u-programme.htm

http://www.reverseamd.com/

http://www.seniormag.com/conditions/vision/macular-degeneration.htm

Does anyone have any experience with this?

Did it work?

Please comment and advise.

Lauren Tappen writes:  I have tried current microstim not for any length of time. I have a friend who has been using this therapy extensively and I will pass on this information to her. I also know of a therapist in Raleigh that has been using the Microstim as a part of her practice.

Well 2009 is coming to an end.

This has been my second complete calendar year in post as CEO at RP Fighting Blindness. In some ways it has been a tough year, like many charities we are working in difficult economic times. In other ways it has been quite exciting – research progress has been made and new projects started, and there have been some other notable achievements as well.

Towards the end of the first quarter of the year we should be publishing our full formal report and accounts, but here’s a few thoughts in the meantime.

Finance

Well, there’s no doubt it’s been a hard year. The UK economy is in a deep recession and likely to remain so for a while yet. Unfortunately therefore we have not been able to increase income in 2009 as much as we wanted to, but at least we have held our income levels up - many charities have not been able to do that. Our plans for growth are still perfectly valid, and the basic premise of growing income by employing professional fundraising staff still stands of course. The original plan for the next step will remain unchanged but will be deferred until the middle on the coming year, and unless there is further worsening of the economic environment we are still intending to generate over £1m in 2010. I think there are plenty of reasons to remain optimistic, especially given the fantastic support we have been getting from our members and volunteer fundraisers.

Projects

We approved two new projects in 2009 and as we go into the new year there are about half a dozen applications from various research institutions for more funds for new projects. As I wrote in our newsletters, this is a great indicator of the innovation and potential still amongst RP researchers.

Prof Robin Ali’s gene therapy work continues as a key project. Lottery money has been invested in Prof. Mike Cheetham’s work, Prof. Andrew Lotery is being supported at Southampton General Hospital, and several projects at Moorfields Eye Hospital are likely to be announced in early 2010.

Away from our own work, exciting progress on the use of retinal implants, and announcements from the USA about the use of growth factors give cause for optimism. I’ve written several times here and on our main official website about both of these.

Other Achievements

This year we have launched our Outreach Project and made progress in improving the way we make contact with people diagnosed with RP. We’ve launched our new DVD film, two years in the making, and a fantastic piece of work in collaboration with Channel 4. We’ve replaced our database and trained our staff to use it. We’ve made membership available online and improved further the way we use technology. We’ve established an effective presence on Facebook, run two major concerts, engaged a team of committed runners and established a presence at the London Marathon at last.

We’ve taken a group of people with RP trekking in the Sahara and raised tens of thousands in sponsorhip. We’ve launched an overseas adventure for 2010 and planned one for 2011 as well (and we have ideas for a VERY exciting and unique trip in 2012). We’ve increased our presence in the media including mainstream Radio 4 and Radio 2 items.

We welcomed over a hundred members to a successful AGM in Cardiff, relaunched leaflets, posters and other publicity materials, updated all our medical information on the internet again, and increased the distribution of our electronic news bulletin. We expanded our Medical Advisory Board, made stronger links at the Association of Medical Research Charities and the Genetic Interest Group, and got involved in several projects to develop ‘best practice’ with respect to genetic testing in the UK for RP.

There is a lot more too, but I guess I should write it all in our annual report rather than here!

Anyway, I’d like to wish all readers of this blog a very Happy New Year and here’s to a successful 201o.

Artificial Retina Video  CNN (12/11, Smith) reported that retinitis pigmentosa patient Barbara Campbell of New York “is one of only 14 people in the” US “participating in an FDA-approved study of” a second-generation “artificial retina” with 60 electrodes. This past July, “Campbell underwent surgery to implant the microchip into her eye” and now “wears a pair of sunglasses outfitted with a small camera. As she scans and focuses the camera on an object in her environment…a wireless device transmits that image to the artificial retina inside her eye,” providing her with a “rudimentary level of vision” that allows her to see light. Scientists are now developing devices with many more electrodes to provide “more detailed vision.”

This is simply an unashamed promotion of our Christmas Concert at Milton Keynes’ Stables Theatre next Friday (11th December). The event is again to raise money for RP research and brings together a range of young musicians and singers to deliver a fun evening of christmas music. Visit http://www.musicforsight.org.uk for more information and to book tickets.

The artists are all giving their time and talent for no charge, so please, if you or someone you know has RP, support the event if you can. The theatre is a short taxi ride from Milton Keynes mainline railway station and is accessible to all.

http://www.musicforsight.org.uk

Wow, what a great event yesterday as we launched our new patient information film at the Houses of Parliament in London. With the support of John Bercow MP, the Speaker of the House of Commons no less, we launched the film to an audience of about 110 members, politicians, researchers, and others with an interest in our work. The event was sponsored by Second Sight as well, so our thanks to them for covering the cost of the catering, which really capped off a great launch of the film.

The film itself is really important, especially (we believe) for people who have been newly diagnosed with RP. It lasts for about 45 minutes and covers all sorts of important issues such as mobility, family, working, coping, children, diagnosis, counselling, and lots lots more. It’s available from the office on DVD and is also online at http://brps.org.uk/index.php?tln=gettinghelp&pageid=323. The online version is divided into 10 ‘chapters’ for easier viewing.

Importantly too, the event demonstrated how RP Fighting Blindness is continuing to raise its profile and highlight RP as a major cause of sight loss. John Bercow has been very supportive and added to this yesterday by saying, publicly, that he would be happy to hear from us again and to do what he can to support us in his capacity of Buckingham MP and as Speaker. He spoke eloquently and in a well-informed way about RP too, obviously taking a genuine interest in our work.

Also at the event was Jeremy Vine, as our guest, following his making the BBC Radio 4 Appeal on our behalf back in January. It was good to be able to introduce him to our Trustees and members, and again he was very supportive.

More about the film is available here.

This week our intrepid four trekkers, who have hiked to Everest Base Camp to raise money for our research fund, returned to the UK.

They’ve done a great job, and for us it’s been a great fundraiser because we joined a group from Fighting Blindness Ireland. This meant that we didn’t have to worry about the organisation and administration too much, we could just focus on supporting our four participants.

Liz, Steve, Jo and Lauren have each committed to raise £5,000. Obviously the costs of the expedition have to be covered from that but there will still be a net profit for RP research of at least £10,000.

You can click on this image to view the full size version.

Because the trips to Morocco and Nepal have been successful, we have now organised our next overseas challenge. We will be taking a group to Namibia next year, on a ten-day expedition which will also include building a school playground in a remote village. This will be a true ‘trip of a lifetime’ and at the same time will raise lots of money for our RP research, if you want to know more, give the office a ring on 01280 821334 (David or Michelle). There is also some information at
http://www.trektofightblindness.org.uk

On a recent search of the Internet, Google listed Stem Cells for Hope.Com first. Although there are several clinical tests for the use of stem cells for treating macular degenration and retinitis pigmentosa, this one should be viewed with extreme scepticism.

The only clinics they list are in Mexico and the Ukraine.

Claim: RAPID – NO invasive surgery required.

Reality: Stem cells are injected into the eyeball near or onto the retina.

Claim: SAFE – NO risk of transferring infections or other side effects.
Reality: There is always a risk of infection and cell rejection.

A basic statement in their webite.  Stem Cells for Hope accepts Discover, MasterCard, VISA and American Express credit cards.

That seems to be their primary concern.

Since Google listed this site first, I think it is a comment on Google’s ranking system. Be very cautious.

http://www.stemcellsforhope.com/index.htm

The following is from Research Buzz:

Clinical research company Quintiles has launched Clinical Research at http://www.clinicalresearch.com, a Web site that, well, makes it easier to find clinical research.

The front page of the Web site asks you to provide the condition for which you’re searching and a location. If you enter something ambiguous (like “cancer”) the site will suggest topics. The location can be as narrow as a zip code, or a city (Madrid, Spain is one of the examples) or as encompassing as USA.

I did a search for autism in USA. I found 81 global studies but two within 150 miles of my stated point — one in Kansas City and one in Oklahoma City. When you look at the results for your search you’ll get a screen that looks like this:

You’ll notice that there are many ways to filter your search results — by age, gender, type of study, etc. — if you happen to get more than two search
results. Each map pointer has a brief amount of information about the study, but to get more data you’ll have to click on the title of a study, when the map will center on that study and present more context and additional details in a pointer bubble. You’ll also be able to get study contact information, find similar studies, or e-mail the study to a friend. (It kind of bugs me that you have to register to get study contact information.)

What you’ll find really depends on what you’re researching — I found one study of thyroid disorders, and that was in the context of breast cancer. When you review the available clinical trial studies please be sure to check the last time they were updated. Of the two autism studies I looked at, one was last updated in 2005. (The other was updated in the last week.)

The registration thing bugs me but this site has a lot of information and the search is easy to use. Worth a look.

Here is a sample:

http://www.researchbuzz.org/wp/find-a-clinical-trial/

Dampening a light-sensing reaction in the eye might slow a common cause of blindness. Molecules designed to slow the production of toxic byproducts in the eye by making it less sensitive to light are now being tested in patients with macular degeneration.

A growing pool of evidence suggests that the build up of specific compounds in the eye can hasten the cellular damage that underlies the disease. These compounds accumulate in the photoreceptors–cells in the retina that detect light–during normal eye function as the light-sensitive pigments in these cells change conformation in response to photons. 

One form of the photopigment, a derivative of vitamin A, is highly reactive and leaks into nearby tissue called the retinal pigment epithelium. “Over time we think these compounds are a burden for the retinal pigment epithelium, which is essential for the healthy function of the photoreceptors,” says Janet Sparrow, director of the Retinal Cell Biology Laboratory at Columbia University, in New York. “In age-related macular degeneration, particularly the dry form, these cells die, and the photoreceptors follow.”

While this reaction is vital for sight, researchers believe that slowing the cycle in the subset of photoreceptors responsible for night vision, known as rods, could slow damage without having a large impact on daytime vision.

One compound developed by Acucela that is in clinical trials inhibits the enzyme that converts the photopigment in photoreceptors from one form to another. This process happens only in the eye, allowing the drug to be administered systemically without affecting other tissue.

A second drug that acts by a slightly different mechanism is being evaluated for macular degeneration by Sirion Therapeutics, a Florida-based pharmaceutical company. The compound is a synthetic vitamin A derivative that is thought to reduce toxin buildup by binding to one of the proteins involved in the reaction. According to preliminary results from tests of the drug in patients with late-stage dry macular degeneration, it can slow the scarring that is characteristic of the disease by 45 percent. However, scientists won’t know if the results are statistically significant until completion of the study next year. Because no treatments have been approved for dry AMD, the U.S. Food and Drug Administration has fast-tracked the drug, speeding the review process.

http://www.technologyreview.com/biomedicine/23835/page1/

Yesterday evening the ‘Music For Sight’ event took place at Warwick Arts Centre, here’s a few thoughts on the concert and the build up to it.

The concert itself was truly brilliant. The British Police Symphony Orchestra, Denise Leigh, and Simon Callaghan really did us proud with stunning performances. We were treated to some really high class musicianship and we were all very proud of the quality of the event, which had been in the planning for many months.

As a fundraiser it’s been less successful. We are likely to just about cover our costs, but the fact is that we didn’t get enough people buying tickets, which is a real shame.

Perhaps the tickets were overpriced to start with? Mind you, we did reduce the price significantly (to just £15 for members) and then in the last few days we even gave them away free of charge. Even so, we gathered a smaller audience than we needed to make a big fundraising success.

The audience that was there were great – really appreciative, and they also contributed over £1,400 to a collection on the night.

The venue is accessible, close to mainline rail, and has all modern facilities, so why didn’t we get the support we needed from our members, and others, and classical music fans, from across the Midlands in particular?

These are the questions we will be pondering as we try and decide whether to take up the orchestra’s offer to do another event for us in 2011. In the meantime, comment and thoughts on this would be appreciated.

THe event programme and details have been archived at http://singforsight.wordpress.com

The New York Times that researchers from the Massachusetts Eye and Ear Infirmary, the VA Boston Healthcare System, and Cornell University have demonstrated retinal implants that they say will resist the jarring of daily use.

The implant contains a tiny array of electrodes whose tips slide into a snug berth just beneath the retina…and are held in place by natural suction. These electrodes prompt the remains of retinal circuits to transmit signals to the brain, allowing patients with retinitis pigmentosa, a disease that damages the rods and cones in the eye, and for macular degeneration, which also affects these photoreceptors, to detect light and dark and to find the edges of objects.

The Health Resources website has a message board dedicated to Retinitis Pigmentosa, giving the general informatin, the latest medical developments and sharing inspirational stories.

http://www.health-res.com/retinitis-pigmentosa-message-board/

A single injection in a patient’s eye brings ‘astounding’ results. The findings may offer hope for those with macular degeneration and retinitis pigmentosa.

Pennsylvania researchers using gene therapy have made significant improvements in vision in 12 patients with a rare inherited visual defect, a finding that suggests it may be possible to produce similar improvements in a much larger number of patients with retinitis pigmentosa and macular degeneration.

The 12 patients had Leber’s congenital amaurosis, which affects about 3,000 people in the United States and perhaps 130,000 worldwide. Victims are born with severely impaired vision that deteriorates until they are totally blind, usually in childhood or adolescence. There is no treatment.

Video:  http://multivu.prnewswire.com/mnr/chop/40752/

http://www.latimes.com/news/nationworld/nation/la-sci-gene-therapy25-2009oct25,0,2334183.story

Duke Eye Center, Durham, NC

http://www.dukehealth.org/eye_center/specialties/macular_degeneration/macular_degeneration

UNC Dept of Ophthalmology, Chapel Hill, NC

http://www.med.unc.edu/ophth/living-with-low-vision

Wilmer Eye Center at Johns Hopkins, Baltimore MD

http://www.hopkinsmedicine.org/wilmer/services/lowvision.html

Baskin Palmer Eye Institute, Miami, FL

http://www.bpei.med.miami.edu/site/faq/faq.asp

Mayo Clinic, Rochester, Minnesota

http://www.mayoclinic.com/health/macular-degeneration/DS00284

Lighthouse International, New York, NY

http://www.lighthouse.org/clinical-services/the-low-vision-practice

Check Local Services tab above for details.

Low vision, a collective term for vision loss that cannot be reversed by glasses, medication, or surgery, is one of the major areas of research and treatment at the Wilmer Eye Institute at Johns Hopkins.  The work has led to novel solutions for some patients.  Those with vision impairment suffering from macular degeneration (a disease that damages the center of the retina, called the macula) and other vision problems receive detailed visual-function testing, evaluation and rehabilitation.

At the Low Vision Rehabilitative Service, a multidisciplinary team of doctors and rehabilitative specialists works closely with the patient, family, friends and the referring doctor to assist an individual in regaining function lost by visual impairment.  This typically includes addressing vision issues causing problems with reading, driving and activities of daily living.

Typical conditions seen at this service include:

• Diabetic retinopathy
• Glaucoma
• Macular degeneration

Contact Information

Phone: 410 – 955 – 0580

Lions Vision Research and Rehabilitation Center

Wilmer Ophthalmological Institute

550 North Broadway, 6^th Floor

Baltimore, MD  21205

http://www.hopkinsmedicine.org/wilmer/services/lowvision.html

The Baskin Palmer Eye Institute in Florida has full medical and rehabilitative services. It is one of the finest low vision care centers in the world.

Low Vision is a partial loss of vision caused by a decrease in acuity resulting from eye diseases such as Macular Degeneration, Glaucoma, Cataracts, and Diabetic Retinopathy. Vision loss is a difficult condition, but fortunately there are many low vision aids that can help you cope day to day.

Low Vision
Rehabilitation Center at
Bascom Palmer Eye Institute
900 NW 17 Street
Miami, Florida 33136
Ph: (305)  326 – 6136
Fax: (305)  326 – 6057
Email: SGartner@med.miami.edu

Low Vision
Rehabilitation Center at
Bascom Palmer Eye Institute
of The Palm Beaches
7108 Fairway Drive
Palm Beach Gardens, FL 33418
Phone: (561)  515 – 1500
Email: SGartner@med.miami.edu

http://www.lowvisioncenter.org/low_vision_care.htm

Tart Cherry

Things haven’t been too bad of late. My work load has been somewhat reduced due to the rundown of the hospital where I work. Because of this things are going at a much gentler pace at the moment meaning that my muscles are not suffering the way they have  done when things have been hectic in the past.

Tomorrow I’m off for an eye test at Specsavers due to a metabolic change in my eyes, for which I attend the eye clinic in the Royal Victoria Hospital, Belfast, so that they can keep an eye on them in case there may be deterioration in them. The doctor checked to see if there was any relationship between my eye problem and McArdle’s disease, but he could only find one other recorded case so he has an open verdict at present about the two being related – Retinitis pigmentosa – though it is in a stagnant stage with no change at present. I go to the hospital once a year to have my eyes photographed.

Today whilst I was reading the Daily Express I came across a very interesting article about muscle pain in exercise and tart cherry juice which seems to reduce the pain, the article can be read HERE

Everest poses the ultimate trekking challenge

Today 4 intrepid and brave members have set off on a fantastic journey of their lives, trekking in Nepal to Everest Base Camp. What’s more, 2 of our amazing quartet have RP - our members are proving once again that the condition does not have to be a barrier to some stunning experiences.

Louise, Stephen, Jo and Liz have each committed to raising at least £5,000 each in sponsorship to take part on the expedition, with the profits from the adventure going to our medical research fund.

The trip lasts for two weeks, because the trek timetable has to allow for acclimatisation to the altitudes. On our main website we’ll be posting photos and reports if we get them (communication, as you might expect, can be a little ropey), and we’ll certainly include a report after the event.

In the meantime I want to record my gratitude on behalf of all of our members to the whole team. You can post a message of support by responding to this item with a comment, or you can make a donation at http://www.justgiving.com/lizcassidy/

If you are feeling adventurous, our next expedition is in September 2010, to Namibia, where we will be trekking to a remote village and then spending several days with the local people building a school playground. If you would like to take part please call 01280 821334. We want 15 participants with RP and 15 with full sight to take part, and the trip is already half filled nearly a year in advance. Let us know quickly if you are interested.

The NY Times has an extensive article on low vision research, artificial retinas, retinal implants, macular degeneration, and developments in the restoration of sight. Included is an item on creating a replacement cornea made from the patient’s eye tooth.

http://www.nytimes.com/2009/09/27/health/research/27eye.html?pagewanted=1&_r=1&hp

EyesFree, a new interface for Google’s Android mobile phone operating system, provides a perfect illustration of what today’s “assistive technology” researchers are looking for. It provides a way for blind people to use a phone with a touch-sensitive screen, but the corollary is that it also provides sighted people with an easier way to use the phone. In fact, they can make calls without even looking at it.

The idea behind EyesFree is that wherever you put your finger on the touchscreen represents the number 5. If you want 1, you move your finger up and to the left, and if you want 8 then you move it straight down, and so on. In alpha mode, your finger is surrounded by letters instead. You get spoken feedback for each selection, and if you pick the wrong number or letter, you can delete it by shaking the phone.

Users can download it from the Android marketplace, along with Accessibilty API’s and text-to-speech software. The EyesFree interface is also available on an iPhone

Video: http://www.youtube.com/user/EyesFreeAndroid

http://www.guardian.co.uk/technology/2009/sep/23/gadgets-people-disabilities-phones