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Birdshot Chorioretinopathy

What is Birdshot Chorioretinopathy?

Birdshot Chorioretinopathy is a rare inflammatory ocular disorder characterized by severe inflammation of both the choroid and retina. The disorder is thought to be an autoimmune condition.

 

Birdshot Chorioretinopathy is a rare inflammatory ocular disorder characterized by severe inflammation of both the choroid and retina. The disorder is thought to be an autoimmune condition.
Acknowledgement of Birdshot Chorioretinopathy has not been added yet.
Prevalence Information of Birdshot Chorioretinopathy has not been added yet.
Synonyms for Birdshot Chorioretinopathy has not been added yet.
The cause of Birdshot Chorioretinopathy is unknown. It is thought to be an autoimmune condition and seems to mainly affect people who carry the HLA A29 antigen. It is possibly caused by an environmental trigger.
There are several symptoms that affect patients with Birdshot Chorioretinopathy.
Name Description
Decreased vision Decreased vision occurs in about 68% of patients
Floaters Floaters occur in about 29% of patients
Nyctalopia Nyctalopia occurs in about 15% of patients
Dyschromatopsia Dyschromatopsia occurs in about 12% of patients
Glare Glare occurs in about 19% of patients
Photopsia Photopsia occurs in about 17% of patients
Fluctuating vision Fluctuating vision occurs in about 7% of patients
Pain Aching pain in a tooth or in the area surrounding a tooth
Decreases depth of perception Decreases depth of perception occurs in about 5% of patients
Shimmering vision Shimmering vision occurs in about 3% of patients
Metamorphopsia Metamorphopsia occurs in about 3% of patients
Decreased peripheral vision Decreased peripheral vision occurs in about 3% of patients
Patients may present with complaints of severe nyctalopia despite normal Snellen visual acuity. Other reported presenting symptoms included glare, photopsia, photophobia, fluctuating vision, decreased peripheral vision, metamorphopsia, and decreased depth perception. Symptoms can precede the onset of the classic depigmented spots in the fundus by several years.
Diagnostic tests of Birdshot Chorioretinopathy has not been added yet
The appropriate level of treatment is determined by the severity of the inflammation. Conflicting reports exist regarding the efficacy of steroids. Some patients with mild inflammation may respond well to regional injection of steroids. Other patients require the use of systemic prednisone for control of the inflammation. Some patients may be controlled on less than 10 mg/d, while other patients require higher doses. Long-term treatment, even 10 mg/d of steroids, is undesirable, considering the high risk of significant morbidity and mortality of such treatment. Many patients show no significant response to steroid therapy. Cyclosporine has been shown to have a beneficial effect on Birdshot Chorioretinopathy inflammation in retrospective case series. Initial reports demonstrated improved visual acuity, decreased vitritis, and stabilization of eyes with cyclosporine dosages of 10 mg/kg/d. However, this dose also was associated with a high incidence of nephrotoxicity and hypertension. Vitale and colleagues reported a series of 19 cases of Birdshot Chorioretinopathy, which demonstrated that cyclosporine treatment with lower dosages, from 2.5-5 mg/kg, can be effective.7 This series showed control of vitreal inflammation in 88.5% of eyes and improved or stable visual acuity in 83.3% of eyes. However, the low incidence of drug toxicity was most striking; there were only 2 cases of hypertension and no cases of nephrotoxicity. One suggestion is to initially start cyclosporine dosages at 2.5 mg/kg and then to increase to the level necessary to control the inflammation, while ensuring avoidance of drug adverse effects. The maximum dosage is 5 mg/kg according to this author. Monitoring for blood counts and renal function is performed every 4-6 weeks, along with blood pressure monitoring. Cyclosporine serum levels are not followed at these dosing regimens. Other potential adverse effects, such as hirsutism, paresthesias, tremor, and gingival hyperplasia, are not risks for morbidity, but are mentioned, since lowering of drug dosage or discontinuation of the medication may be indicated if such adverse effects occur to a point of affecting the quality of the patient's life. One study reports the use of ketoconazole as adjunct therapy to cyclosporine. Ketoconazole delays metabolism of cyclosporine; hence, it may lower the dose of cyclosporine required to maintain control of inflammation. Silverstein and Wong demonstrated that cyclosporine trough levels could be maintained in a patient when the cyclosporine dosage was dropped from 200 mg/d (3 mg/kg) to 50 mg/d (0.75 mg/kg) with the addition of ketoconazole at 200 mg/d. This amounts to an 80% reduction of cyclosporine consumption. While this may be cost-saving, one cannot necessarily equate stabilization of cyclosporine serum levels with adequate control of inflammation nor with reduced potential toxicity. After all, the serum cyclosporine levels are still in the therapeutic range, and one might expect cyclosporine toxicity prevalence to be unchanged. Additionally, ketoconazole is not without potential adverse effects, especially the risk of hepatitis. Other immunomodulatory therapies have been described. Kiss and colleagues reported the use of mycophenolate mofetil, azathioprine, methotrexate, and daclizumab in a series of 28 patients with Birdshot Chorioretinopathy; however, the small size of the study precludes any comment on the efficacy of any single drug. LeHoang and colleagues reported the use of intravenous immunoglobulin in a series of 18 patients as initial therapy for active birdshot retinochoroidopathy, and they noted stable vision in 33 of 36 eyes over a mean follow-up period of 39 months.
Birdshot Chorioretinopathy is a chronic disease that is characterized by multiple exacerbations and remissions. Birdshot Chorioretinopathy tends to stabilize over a 3- to 4-year period, however, greater than one third of patients reach a visual acuity of 20/200 or worse. Visual loss is most commonly the result of cystoid macular edema and optic nerve atrophy. One series described deterioration on ERG and visual field or significant visual morbidity in 10 of 15 patients during follow-up. Of note, most patients in the series either had no treatment or treatment with steroids alone (ie, no immunomodulatory therapy). If uncontrolled, Birdshot Chorioretinopathy usually has a progressive course, with significant ocular morbidity as the consequences. Complications from Birdshot Chorioretinopathy include: 1.) Chronic cystoid macular edema – 50%; the most common cause of reduced central visual acuity 2.) Epiretinal membrane - 10% 3.) Macular pucker 4.) Choroidal neovascularization 5.) Peripapillary subretinal neovascularization - 6% 6.) Retinal neovascularization located on the optic disc 7.) Peripheral retinal neovascularization with capillary nonperfusion 8.) Optic nerve atrophy Other complications, such as cataract, glaucoma and rhegmatogenous retinal detachment can occur as well.
Tips or Suggestions of Birdshot Chorioretinopathy has not been added yet.
References of Birdshot Chorioretinopathy has not been added yet.
test Created by robert_RG
Last updated 27 Feb 2017, 12:31 AM

Drugs cost Created by chvalenzu
Last updated 21 Feb 2016, 07:00 PM

Posted by Tjreinoso
21 Feb 2016, 06:52 PM

Hi CHVALENZU -- My medical costs have not been an issue because of fortunate medical insurance. No idea about other countries. That said, I have refused my eye specialist's recommendations for prednisone and methotrexate - concerns over side effects. Between 8/2015 and 12/2015 my only treatment was acupuncture twice monthly and Chinese herbs. ERGs were stable during this time. January, 2016, I started 2mg (bedtime) Low Dose Naltrexone (LDN). Symptoms are now less than half. I recently increased the dose to 3mg. It''s an inexpensive old drug (generic and off label) with almost no side effects at low dose. No research for Birdshot but often used for MS, RA, etc. Check out www.LDN2016.com for the LDN conference--12.5 hours of high level professional education for Cancers, autoimmune disorders, etc. TJ.

Posted by Tjreinoso
18 Feb 2016, 12:05 AM

Hi Wendy--This is not Anne. I'm TJ. Another "birdgirl" Love your name :) I'm not crazy about Facebook either, and had to have help finding the birdshot group there recently. Near the top right of the FaceBook home page there is a box for "groups" and that is the entrance. Once I got into groups and typed in birdshot I found it easily. It is a very active group! I have difficulty reading all the posts. Please post here again and I will try to help, although probably not the best person to ask. Best! TJ.

Posted by BIRDG1RL
17 Feb 2016, 05:54 PM

Hi, Annie, I've been trying to find the Birdshot Forum for months on Facebook. How do I get to it? Thanks, Wendy

View Full Thread (3 more posts)
cyclo/cept cocktail not working Created by BIRDG1RL
Last updated 15 Feb 2016, 10:14 PM

Posted by BIRDG1RL
15 Feb 2016, 10:14 PM

After 10 years of successfully taking Dr. Foster's Cellcept/Cyclosporine cocktail, I learned at my last visit that it no longer seems to be working. Dr. F upped my dose of Cellcept from 2 to 4 pills a day. If that doesn't work, next step is adding monthly Remicade infusions. Anyone else have the cocktail stop working? If so, what was prescribed next? Thanks, Wendy

inflammation diet Created by dbyriel
Last updated 14 Feb 2016, 01:50 PM

Posted by Bakersdoor
14 Feb 2016, 01:50 PM

There is some evidence that diet may help but no scientific proof. There can be no harm in trying to eat healthily, and cutting out inflammatory foods, but the chances are that you will need more than that to get Birdshot under control. More info about diets etc on the Birdshot Uveitis Society website at www.birdshot.org.uk and on the facebook Birdshot group and Page.

Posted by Tjreinoso
5 Feb 2016, 04:19 AM

After being diagnosed with BSCR last year I also discovered an anti-inflammatory diet is strongly suggested. As it turned out I have been consuming an anti-inflammatory diet for decades. It is just one of many good health habits to consider along with good exercise, sleep, weight control, etc., etc., and I don't really think it will change the course, just be supportive. The only real dietary change I have made as a consequence has been to move to use of organic oils (olive, peanut). I don't like the quality/taste of the organics near as much, but did make that switch. I have had significant positive changes in the past two weeks since starting low dose naltrexone (LDN), having refused my ophthalmologist's recs for high dose prednisone and methotrexate.

Posted by chvalenzu
4 Feb 2016, 01:20 PM

Hi I tried with a paleolitic diet but I had to suspend, I´m going to start again this month, really needs effort to complete this diet, it´s very strict and if you want results you have to to take serious. This are some links. bye http://robbwolf.com/what-is-the-paleo-diet/

View Full Thread (2 more posts)
Low dose naltrexone Created by Tjreinoso
Last updated 17 Nov 2015, 09:55 PM

Posted by Tjreinoso
17 Nov 2015, 09:55 PM

I was diagnosed with BSCR in July, 2015. I have refused treatment with prednisone and methotrexate. I am considering starting low dose naltrexone (LDN) and wonder if anyone has any experience with this approach. Thanks for your feedback!

Free Birdshot Conference Call Nov 13 Created by dagmara56
Last updated 3 Nov 2014, 05:46 PM

Posted by dagmara56
3 Nov 2014, 05:46 PM

November conference call: ADA, EAP, FLMA, SSSI and other confusing acronyms. For those in the US, what are your rights under the law? I am not an attorney, but will take you through the basics of what is covered, and not covered, by a disability. December call will cover birdshot testing. If you do not have the conference call number or time, please message me privately or request by emailing me at dagmara@mindspring.com Hope to talk to you then

October 16 Birdshot conference call Created by dagmara56
Last updated 4 Oct 2014, 02:19 PM

Dallas Fort Worth Support Group Meeting Oct 18, 2014 Created by dagmara56
Last updated 23 Jul 2014, 12:17 PM

Posted by dagmara56
23 Jul 2014, 12:15 PM

The next meeting of the DFW birdshot retinochoroidopathy support group will meet October 18, 2014. Irving Heritage Park Irving Heritage Park Building 217 Main St., Irving, TX 10 AM - 12 PM Users can RSVP at Meetup - DFW Birdshot Information http://www.meetup.com/BirdshotInfo/events/196177532/

Monthly birdshot call August 14 2014 Created by dagmara56
Last updated 11 Jul 2014, 03:34 PM

DFW Meetup for a face to face meeting Created by dagmara56
Last updated 27 May 2014, 01:57 PM

Community External News Link
Title Date Link
Community Resources
Title Description Date Link
Diagnosis and treatment overview for Doctors in the UK. 2007

This document, from Patient Plus, was published in 2007 and gives an overview of the diagnostic procedure and subsequent care a Birdshot patient may expect to receive in the UK.

 

 

The authors state that Birdshot is a progressive disease, that about 20% of patients will have a self limited course of this disease, and with few visual symptoms, require no treatment, while the rest will have chronic disease with periods of activity and remission. For the majority of patients, management of the disease is provided through cortisteroid (tablets and, if needed, injected into or around the eye) with cyclosporine or cytotoxic agents.

 

03/20/2017
Birdshot Chorioretinopathy. Long term follow-up. Rasquin and Perelux. Belguim. 2004.

This paper describes a Birdshot patient followed clinically for 23 years. At presentation, in 1984, the patient’s vision was 20/20 in both eyes. The patient was initially treated with cortisteroid for a year with cyclosporine added at month nine and continued for two and a half years. At the end of this treatment, intraocular inflammation was controlled, but the patient had begun to experience kidney side effects from the cyclosporine and so treatment was stopped. There were mild episodes of inflammatory activity after treatment was ended, but systemic therapy was not restarted. By 1992, the patient’s visual acuity had reduced to 20/30 and 20/25, by 2001 colour vision was significantly affected and visual acuity was 20/60 and 20/40. The authors comment that there is lack of consensus about the drugs used in treatment and the duration of treatment, they state that vision drops late in the course of the disease, that retinal alterations and loss of retinal function progress despite minimal intraocular inflammation and make the point that since visual acuity remained stable till late in the course of disease, that vision

 

is not a good way to decide for treatment.

 

 

 

 

03/20/2017
Birdshot retinochoroiditis: long term follow-up of a chronically progressive disease.

Describes the longterm progress of the disease.

03/20/2017
Overview of uveitis. Pavesio. UK. 2008.

This is a comprehensive over view of the treatment of uveitis in the UK written by a UK consultant. While it is not focused on Birdshot specifically, you will find details of the treatments available to us in the UK and their side effects. It contains a warning about imuran, for some patients, and ends with a five year plan.

 

03/20/2017
Overview of uveitis treatment. 2007

O’NEIL M. BISCETTE, MD, MSCmpE • HOWARD F. FINE, MD, MHSc • THOMAS E. FLYNN, MD This is a comprehensive overview paper which covers the diagnosis of various forms of uveitis, provides a chart matching HLA tests to diseases and runs through the various groups of drugs used in treatment, explaining their actions and their side effects.

 

03/20/2017
Retinopathy, Birdshot. C Michael Samson. US.

This is a very detailed paper and is perhaps best read when you feel you’ve grasped the basics about eyes in general, the disease and its treatment. If there is uncertainty about whether or not you actually have Birdshot, there is a section which deals with other uveitic eye diseases which may help you follow your specialist’s thinking about your own case. Like the other papers, this one describes the disease, what happens in the eye, treatments (with effective doses given), and makes some references to studies of others working in the same field. It’s a paper well worth dipping into when you are puzzled about something happening in your own eyes.

03/20/2017
Birdshot chorioretinopathy: clinical characteristics and evolution.

H A Priem and J A Oosterhuis. Belguim. 1988.

 

 

(You need to register to get the free adobe download).

 

If you want to see what our eyes look like inside, the images are here. This is a comprehensive article which describes the clinical features of Birdshot and the criteria for diagnosis. The paper is based on the five year progression of the disease in 102 patients from 14 European eye clinics in five European countries. There is a table which charts the patients’ visual acuity at the end of the five years and states the treatment each received. Most received steroid only, a couple were treated with cyclosporine, one of these with cyclophosamide as well and a few with azathioprine (imuran). The visual acuity statistics tell us how important it is to receive effective treatment, if we wish to retain our sight for as long as possible. Scrolling to page 655, takes you to Table 9. If we reach a specialist, if we accept the modern therapies on offer, there is a good chance our eyes won’t end up on a table like this one.

 

 

03/20/2017
Birdshot retinochoroidopathy.

By A. Gasch, J. Smith, and S. Whitcup. US. 1999

 

 

This is a lengthy paper which deals with diagnosis, treatment, tests to follow the progression of the disease and prognosis. The link will take you first to a page which gives further papers from the 20th century you may wish to read. Comparing the information in these papers with the more recent papers should help us to appreciate the advances being made in the treatment of Birdshot, the rapidity of this progress and give us hope that our sight will be preserved, even though our prognosis, in the past, has been so grim. We should take comfort and hope from the idea that some of the best brains in the world are looking after our eyes.

 

03/20/2017
HLA and immunogenetics. Research and tissue antigens. US. 2007

This paper delves into genetics and relates diseases to HLA markers. If you are puzzled about your HLA tests, this explains some of it and tells us how rare we and our eyes are. It also points out that animal studies are not always reliable - according to animal models, infliximab shoudn’t work. You need a medical/scientific mind to understand this paper.

 

03/20/2017
Intravitreal Bevacizumab (AvastinTM) as a potent treatment for refractory macular edema in patients with uveitis.

Friederike Mackensen, Matthias D. Becker. 2006

 

Five patients with stubborn cystoid macular oedema and inactive uveitis at the time of treatment were given injections of avastin into their eyes. All five patients had a reduction in their macular oedema, four gained at least one additional line in visual acuity while the fifth’s remained the same. The authors note that longer follow up is required to see if the effect is transient or long lasting. More recent studies suggest that the effect is indeed transient in some patients, that repeated injections are required and it is emerging that the effect of repeated injections eventually wears off

03/20/2017
About Lucentis injections

Lucentis is a similar anti vegf injection to Avastin. It is given into the eye, and can be funded for macular degeneration patients in the UK. NHS Trusts will fund the first three injections and, at the moment, 2008, further injections are being funded by the drug company.

 

03/20/2017
Test your visual acuity online

This link takes you to a ‘test your visual acuity’ online site. (Click the vision resources tab at the top of the web page.)

 

03/20/2017
Amsler Grid

This link takes you to an online Amsler grid. It is useful for checking if you have cystoid macular oedema which is the

 

swelling of the retina and prevents us from seeing clearly, from reading easily, seeing faces clearly and seeing far into the distance. With slight cystoid macular edema, our central vision may still be very good, but when the lines on an Amsler grid look wavy, a little (or a lot) blurred or just plain odd, there is a good chance that we have cystoid macular oedema

 

03/20/2017
About Steroid and anti vegf injections

If you need steroid or anti vegf injections into an eye, the thought of this procedure is far far worse than the actual injection. (Eye surgeons hardly hurt you at all, when compared with dentists and their needles).

 

03/20/2017
Long term follow up of Birdshot patients treated with steroid sparing immunomodulatory therapy

Kiss S Ahmed M Letko E Foster CS. US. 2005.

 

 

This paper reports on 35 Birdshot patients. 28 patients did not have their inflammation controlled at the point of referral and after referral, at some point during their six year follow up, all were treated with steroid sparing immunosuppression. 92.9% were treated with cyclosporine, 67.9% with mycophenolate mofetil, (cellcept) 17.9% with azathioprine, (imuran) 10.7% with oral methotrexate, and 7.1% with daclizumab (zenapax). Complications affecting the eye from Birdshot and/or corticosteroids were cataract (53.6%), cystoid macular oedema (35.7%), glaucoma (21.4%), epiretinal membrane (10.7%), and retinal detachment (3.6%). At the end of the follow up period, up to 89.3% of the patients’eyes had either the same or improved visual acuity. The 30-hertz flicker implicit time was prolonged in 58.3% of initial ERGs and in 62.5% of final ERGs. The bright scotopic amplitude was abnormal in 45.5% of initial and final ERGs. (These tests measure retinal function).

 

The writers conclude that long term preservation of vision is possible for Birdshot patients and prompt treatment with immunosuppressants offers the best hope of keeping retinal function.

 

 

03/20/2017
Intravitreal Triamcinolone (steroid injection into the eye) for Refractory Cystoid Macular Edema Secondary to Birdshot Retinochoroidopathy

Adam Martidis, MD; Jay S. Duker, MD; Carmen A. Puliafito, MD. US. 2001.

 

 

This paper describes the resolution of cystoid macular oedema in two Birdshot patients through steroid injections into the eye. It contains OCT images which will help us understand our own OCT images should we have cystoid macular oedema. The authors point out the risks of these injections into the vitreous (jelly of the eye). The date of the paper, 2001, should be kept in mind. Since then, cyclosporine and/or cellcept has become accepted therapy for Birdshot and the anti vegf injections also can resolve CME. Sometimes an anti vegf injection (lucentis, macugen and avastin) is combined with steroid to enhance effect

 

03/20/2017
The successful use of mycophenolate mofetil in a patient with active birdshot chorio-retinopathy refractory to azathioprine therapy: case report

VIANNA, Raul N. G.; AL-KHARUSI, Nadia and DESCHENES, Jean. Brazil. 2004.

 

 

This paper describes the successful treatment of a Birdshot patient using mycophenolate mofetil (cellcept). The patient developed cystoid macular oedema and retinal vasculitis in both eyes and had 20/70 vision in both. She was initially treated with high dose oral prednisone (steroid) and subtenon steroid injections in both eyes. However, a month later, her visual acuity had reduced to 20/100 and treatmentment with azathioprine (imuran) was started. Within two months, there was reduction of cystoid macular oedema in one eye and visual acuity improved to 20/25. The other eye also improved, but the cystoid macular oedema was not resolved and the visual acuity was 20/60. After a further four months, the oedema had resolved in the 20/25 eye, but not in the other, which suffered a further loss of visual acuity to 20/70. This eye received another steroid injection and after another four months, the cystoid macular oedema was resolved in both eyes and the patient had 20/20 and 20/30 vision. Four months after this, the cystoid macular oedema had recurred in one eye and visual acuity had reduced to 20/60 and 20/80. Since azathioprine (imuran) was not controlling the progression of the disease, treatment was changed to mycophenolate mofetil (cellcept). Within two months, visual acuity had improved to 20/20 and 20/30 and over the next three years of treatment, there was no recurrence of the cystoid macular oedema.

 

 

In this paper, the author also discusses two other studies giving statistics which demonstrate better visual outcomes in patients treated with cyclosporine or cellcept, rather than steroid alone.

 

 

03/20/2017
Comparison of Antimetabolite Therapies for Noninfectious Ocular Inflammation.

Anat Galor MD, Henry A Leder MD, Douglas A Jabs MD, MBA, Sanjay D Kedhar MD, James P Dunn MD, George Peters III MD, Jennifer E Thorne MD, PhD. US.

 

 

These writers compared the effectiveness and side effect profiles of methotrexate, azathioprine (imuran) and mycophenolate mofetil (cellcept) in the treatment of 315 patients with noninfectious ocular inflammation. 128 patients with inflammatory eye disease were treated with methotrexate, 44 with azathioprine, (imuran) and 143 with mycophenolate (cellcept). Treatment success at the initial starting dose of the antimetabolite was achieved by 30% in the methotrexate group, 54% in the azathioprine (imuran) group and 51% in the mycophenolate (cellcept) group. After dose increase or addition of second immunosuppressive agents, the percentage of patients achieving treatment success was higher in the mycophenolate (cellcept) group than in the methotrexate and azathioprine (imuran) groups. The incidence of side effects was higher in the azathioprine (imuran) group compared to methotrexate and mycophenolate (cellcept) with more patients stopping the drug due to side effects in the azathioprine (imuran) group. These writers conclude more patients experience treatment success when taking cellcept, than when taking methotrexate or imuran.

 

03/20/2017
Long-Term Follow-Up of Patients with Birdshot Retinochoroidopathy Treated with Systemic Immunosuppression

Matthias D. Becker Michael S. Wertheim Justine R. Smith James T. Rosenbaum. US. 2005.

 

 

These authors reviewed the progress of 11 Birdshot patients over 15 years. They treated five of these patients with azathioprine, (imuran) methotrexate, cyclosporine A, mycophenolate mofetil, (cellcept) and/or IvIg, as well as systemic steroid or periocular corticosteroid injections. In these patients, inflammation was reduced or stabilised. The writers conclude that even though there is still no agreed strategy for the management of Birdshot, that it is possible to use steroid sparing treatments and preserve vision.

 

03/20/2017
Review of Birdshot. Cyclosporine alone produces better outcomes than steroid alone.

Kayur H. Shah MD, Ralph D. Levinson MD, , Fei Yu PhD, Raquel Goldhardt MD, Lynn K. Gordon MD, PhD, Christine R. Gonzales MD, John R. Heckenlively MD, Peter J. Kappel MD and Gary N. Holland MD. US. 2007.

 

 

This is a detailed article which covers the testing associated with monitoring Birdshot, as well as the history of the disease, symptoms and treatment. The authors state that cyclosporine is better at preserving vision than steroid taken without additional immunosuppression.

 

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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birdshot patient since 1990 and forum founder since 1999

 

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