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Dent's Disease

What is Dent's Disease?

Dent disease is a rare X-linked recessive, chronic kidney condition found almost exclusively in males. The severity of the disease and the specific symptoms can vary. Females, who can be carriers for the disorder, can present with mild manifestations including low molecular weight proteinuria (increased leakage of small proteins in the urine) or hypercalciuria (high urinary calcium levels). Carriers may also be more likely to have a kidney stone, but this is not yet established for sure. Female carriers have a 50% chance of passing the altered chromosome to their child. If the child who received the Dent gene is a male they will have Dent disease.  If the child is a female they will be a carrier (since they will have another X chromosome from their father).  Males with Dent disease most commonly leak large amounts amounts of low molecular weight proteins in their urine.  Affected males also most often have hypercalciuria (elevated urinary calcium).  Dent patients can develop kidney stones or a more diffuse kidney calcification called nephrocalcinosis.  Dent patients are at risk for chronic kidney disease, and some require dialysis or kidney transplantation later in life.  However, some Dent patients will instead have very mild manifestations throughout their life.  Because many of these findings can be asymptomatic, especially the chronic kidney disease, it is important that Dent patients are followed by a physician that understands the disease.

Two forms of Dent disease exist (Type 1 & Type 2) that that are caused by changes in 2 different genes called CLCN5 (Type 1) and OCRL1 (Type 2). OCRL1 mutations can also cause Lowe syndrome, which in addition to kidney problems is also associated with intellectual deficits, elevated muscle enzymes, and cataracts.  It is not clear why patients with Dent type 2 have mostly renal problems but not the other systemic effects, or if they occur they are mild. For example cataracts associated with Type 2 Dent disease are mild and usually do not affect vision.

 

Synonyms

  • Dent disease 1
  • X-linked recessive nephrolithiasis with renal failure
  • X-linked recessive hypercalciuric hypophosphatemic rickets
  • Idiopathic Low-molecular-weight proteinuria with hypercalciuria and nephrocalcinosis
  • Dent disease 2

Dent disease is a rare X-linked recessive, chronic kidney condition found almost exclusively in males. The severity of the disease and the specific symptoms can vary. Females, who can be carriers for the disorder, can present with mild manifestations including low molecular weight proteinuria (increased leakage of small proteins in the urine) or hypercalciuria (high urinary calcium levels). Carriers may also be more likely to have a kidney stone, but this is not yet established for sure. Female carriers have a 50% chance of passing the altered chromosome to their child. If the child who received the Dent gene is a male they will have Dent disease.  If the child is a female they will be a carrier (since they will have another X chromosome from their father).  Males with Dent disease most commonly leak large amounts amounts of low molecular weight proteins in their urine.  Affected males also most often have hypercalciuria (elevated urinary calcium).  Dent patients can develop kidney stones or a more diffuse kidney calcification called nephrocalcinosis.  Dent patients are at risk for chronic kidney disease, and some require dialysis or kidney transplantation later in life.  However, some Dent patients will instead have very mild manifestations throughout their life.  Because many of these findings can be asymptomatic, especially the chronic kidney disease, it is important that Dent patients are followed by a physician that understands the disease.

Two forms of Dent disease exist (Type 1 & Type 2) that that are caused by changes in 2 different genes called CLCN5 (Type 1) and OCRL1 (Type 2). OCRL1 mutations can also cause Lowe syndrome, which in addition to kidney problems is also associated with intellectual deficits, elevated muscle enzymes, and cataracts.  It is not clear why patients with Dent type 2 have mostly renal problems but not the other systemic effects, or if they occur they are mild. For example cataracts associated with Type 2 Dent disease are mild and usually do not affect vision.

Rareshare would like to acknowledge Dr. Lada Beara Lasic, Assistant Professor of Medicine, Division of Nephrology, NYU Medical school and Dr. John Lieke, Professor of Medicine, Mayo Clinic, for reviewing this content.

At least 250 affected families have been reported to date with Dent disease. Dent disease Type 1 is more common than Type 2. Rare disease prevalence and incidence rates are difficult to accurately determine because of frequent misdiagnosis, or because people often go undiagnosed or unreported.

Name Abbreviation
Dent disease 1 Dent disease
X-linked recessive nephrolithiasis with renal failure Dent disease
X-linked recessive hypercalciuric hypophosphatemic rickets Dent disease
Idiopathic Low-molecular-weight proteinuria with hypercalciuria and nephrocalcinosis Dent disease
Dent disease 2 Dent disease

Mutations in the CLCN5 gene can give rise to Dent disease 1, whereas the OCRL gene causes. Dent disease 2. Both genes are important for the normal function of the proximal tubules, the kidney structure where the filtration and reabsorption of water and minerals takes place. Disrupting these genes will disrupt the normal function of the kidney and give rise to symptoms of this disease.

Dent disease is inherited in an X-linked recessive pattern. Both genes associated with this condition are located on the X chromosome, which is one of the two sex chromosomes. Females have two X chromosomes and males have one X and one Y chromosome. The altered gene is passed on from a mother to her son. Women with an altered CLCN5 or OCRL gene usually do not show any symptoms of the disorder, most likely due to their second X chromosome (with an unaltered form of the gene) compensating for the altered gene on the other X chromosome. Sometimes, female carriers can develop mild disease manifestations. In males (who have only one X chromosome), one altered copy of either of these genes in each cell is enough to cause the condition. A characteristic of X-linked inheritance is that fathers cannot pass X-linked traits to their sons, since fathers pass on a Y chromosome (and not an X chromosome) to their sons. Affected males will pass on the altered gene to all of their daughters, who will thus be carriers for the disorder.

The specific disease manifestations vary greatly from person to person, even among affected individuals within the same family.

The most common manifestations are proteinuria (elevated levels of proteins in the urine, especially of low molecular weight or small proteins) and hypercalciuria (elevated levels of calcium in the urine).

Some individuals can also develop deposits of calcium in the kidney (nephrocalcinosis), and more rarely kidney stones. People with kidney stones can experience painful urination, abdominal pain, a block of the urinary tract and recurrent urinary tract infections. Affected patients may also develop low levels of potassium, phosphate, rickets and decreased growth. Many affected patients will develop a progressive loss of kidney function and may need kidney replacement therapies like kidney transplantation or dialysis.

People with Dent disease type 2, in addition to these symptoms, can also experience mild intellectual disability, elevated muscle enzymes and cataracts without vision problems.

The diagnosis of Dent disease can be strongly suggested by finding elevated low molecular weight proteins in the urine (usually over 5-fold the normal range) together with other typical findings. Commonly measured low molecular weight proteins include β2-microglobulin, α1-microglobulinand/or retinol binding protein (RBP). Additional findings consistent with Dent disease include: excessive calcium in the urine (hypercalciuria; generally indicated by greater than 4mg/kg of calcium in a 24 hour urine collection), the presence of kidney stones, the deposition of calcium in the kidneys (nephrocalcinosis), the presence of red blood cells in the urine (hematuria), abnormally low phosphate levels in the blood (hypophosphatemia), impaired kidney function (chronic kidney disease) and a history of Dent disease in the family that follows an X-linked pattern. The diagnosis may be confirmed by a genetic test.

Urine tests can be done to detect the presence of low molecular weight proteins and calcium. Blood tests may reveal low potassium and low phosphate levels. A genetic test may help confirm the diagnosis. The genetic tests examine the chromosomes to detect changes in the 2 genes known to cause Dent disease (CLCN5 and OCRL1).

There is no specific treatment for this condition. Symptoms are treated as they present themselves. Thiazides diuretics can be used to reduce the levels of calcium in the urine and prevent the formation of kidney stones. Angiotensin-converting enzyme (ACE) inhibitors or angiotensin receptor blockers (ARB) can be used to diminish the amount of proteins in the urine and try to prevent kidney damage, although this approach may not work well in Dent disease. Sometimes patients are given potassium citrate for prevention of kidney stones.

However, the efficacy of these treatments is unclear and they can cause side effects. Potassium and phosphate supplements are used to correct low potassium or phosphate levels.

If the condition progresses to end-stage kidney disease, dialysis or a kidney transplant might be needed.

People with Dent disease have a good vital prognosis. End stage kidney disease has been reported to occur in 30% to 80% of males between 30 and 50 years old. However, Dent patients do well with kidney transplantation, and the disease cannot recur in a transplanted kidney.

Tips or Suggestions of Dent's Disease has not been added yet.

https://rarediseases.org/rare-diseases/dent-disease/

https://ghr.nlm.nih.gov/condition/dent-disease

https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-5-28

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=1652

 

UX TESTERS NEEDED: HelpAround Specialty Patient App Created by krystalqle
Last updated 10 Jun 2020, 04:51 PM

Posted by krystalqle
10 Jun 2020, 04:51 PM

Hi! My name is Krystal, and I am part of HelpAround, a digital health startup that's building a mobile platform for specialty patients. The app is designed to help chronic/rare disease patients manage their specialty treatments by providing them with the necessary logistical, educational and community support. 

We're looking for patients who are willing to give us feedback on our prototype(s), so that we can improve our user experience. If you're interested, the details are below:

  • User Demographic: Any patient who is currently taking (or have taken) specialty meds (now or in the past)
  • Goal: Understand which app feature(s) are/aren't user-friendly (we want your honest feedback!)
  • Duration: 1 hour (each session will consist of a series of defined tasks)
  • Platform: Zoom

We would love to hear your opinions and see how we can help improve the patient journey for those with rare diseases. If you are at all interested, please feel free to email me at krystalle@helparound.cc, or respond below. Thank you so much!

RDCRN Survey Created by LadaBL
Last updated 29 Sep 2016, 11:45 AM

Posted by debduarte
29 Sep 2016, 11:45 AM

Lada, is this different from the registry at Mayo? Deb Duarte

Posted by LadaBL
28 Sep 2016, 04:25 PM

Dear Dent mothers, fathers and patients, We have worked hard to create the survey at RDCRN (Rare Disease Clinical Research Network - NIH sponsored). No good response yet - only about 10 patients finished. Link below, please consider!!! https://www.rarediseasesnetwork.org/cms/rksc/Get-Involved/Contact-Registry This is an easier, faster form of research and allows people from all over the world to do it. You will be asked to join contact registry and then do the survey. Good luck! Takes 10 min for moms and a little longer for patients - parents can do that one as well, even if kids are over 18! Please remember, the outcomes of this disease depend on your participation. It is a slow process, but if there is no process, there will be no outcome. My warmest regards, Lada

Various Symptoms of Dents Created by emilysorenson
Last updated 28 Sep 2016, 10:14 PM

Posted by LadaBL
28 Sep 2016, 10:14 PM

Ask them to do phosphorus, FGF 23 and 1,25 vitamin D. Good luck! Who is your nephrologist?

Posted by kjsjd
28 Sep 2016, 09:36 PM

Hi Lada We are in the UK - I met you when you came to the RKD symposium 2 years ago. My son is on the Dents registry and we have filled out all the forms again recently for Barbra Seide... He is also now seeing a metabolic specialist, so if you let me know what tests you require, I can ask at our next appointment in October.

Posted by LadaBL
28 Sep 2016, 08:34 PM

What is his serum phosphorus? If you are in the US, we could include him in phosphorus study and measure phosphorus related hormones which I believe are extremely important for growth but not routinely measured. Lada

View Full Thread (9 more posts)
Recurrent stones, post transplant Created by valgraham
Last updated 17 Jun 2016, 09:03 PM

Posted by valgraham
17 Jun 2016, 09:03 PM

Hi K - good to hear from you. Glad your son's kidney function is stable. FJ is doing ok, thanks. Been on dialysis for a year but we're hoping he will get a kidney transplant later this year, fingers crossed!

Posted by kjsjd
6 Jun 2016, 04:06 PM

HI Val - not been on the site for a while. How is FJ doing? We met in London 2 years ago. My son is now 14 and has been on potassium citrate for several years now. His kidney function is stable and well maintained with no sign of stones as yet. Best wishes. K

Posted by valgraham
16 Nov 2015, 10:02 PM

Thanks you, Minu. That is very helpful and encouraging news. Sorry your husband has had problems too. FJ has always had stones, but fortunately they haven't caused him problems so far. Interestingly, he has never been prescribed or taken potassium citrate.

View Full Thread (5 more posts)
1st Dent clinical trial by Mayo Clinic Created by LadaBL
Last updated 14 Jun 2016, 06:37 PM

Posted by Dixie5346
14 Jun 2016, 06:37 PM

Do you have the results of this clinical trial yet? If so, should we increase phosporous in the diet and which foods are best?

Posted by tieshiea
9 Apr 2015, 03:36 AM

Thanks. I appreciate your time. T

Posted by LadaBL
9 Apr 2015, 02:30 AM

Great! Thanks for reaching out. I did not hear from the research coordinators but will ask. I'll email you. Lada

View Full Thread (3 more posts)
Dent's Conference 2016 Created by CaraM120
Last updated 6 Jun 2016, 03:43 PM

Posted by CaraM120
6 Jun 2016, 03:43 PM

Is there going to be a conference this year? I haven't heard anything yet, and last year they started talking about it around march or april.

Dent's conference 2015 Created by CaraM120
Last updated 12 Oct 2015, 02:06 PM

Posted by LadaBL
12 Oct 2015, 02:06 PM

I'm glad it worked! How was it? Lada

Posted by minu
11 Oct 2015, 01:37 PM

Worked when you started talking, Lada! Hope to see Jay's talk in video later. Thanks so much!

Posted by LadaBL
10 Oct 2015, 03:35 PM

Is it working now?

View Full Thread (2 more posts)
Dent Asociation Created by EvaK
Last updated 12 Apr 2015, 02:17 PM

Posted by EvaK
12 Apr 2015, 02:17 PM

Hi all, I have response from Asdent, they are already in contact with Mayo Clínic, so I hope your collaboration will be great for both. Big hug

Posted by LadaBL
9 Apr 2015, 02:33 AM

Thanks as always! Hope to see you in NY in October!

Posted by minu
7 Apr 2015, 04:17 AM

And again, Lada, if you need any translating or interpreting between Spanish and English please feel free to use me any time. Daniel should be somewhat able to help too.

View Full Thread (11 more posts)
Growth Created by Vicky_p
Last updated 8 Apr 2015, 06:27 AM

Posted by tieshiea
8 Apr 2015, 06:27 AM

My son Zander was dx with dents at 5 yrs. Now is 10.5 yrs. He is 4 ft tall my side.of family 8s short stature. His dad however.is 6ft 8 inch. We started endocrinology and the hand xray. Awaiting MD to get back to me from Stanford University. He had been seen at Stanford for 5 yrs now and luckily dr.potter there was able to dx him early and her him on chlorthalidone. (Sp) which he has been on since.but with varying dosages. He is also skinny. His wt is 56 lbs finally and that has taken 3 yrs to get there. As far as po4 he takes 750mg bid. Neutral phos. 2000 units.vit d just restarted that last 3.months. daily. 80 me kcl 30 20 30 dose during day to combat chlorthaladone k wasting. Avg. K level is 3.3-3.5. Lab about every 3 months. Also takes a milo ride to kick up his k levels. I have Zander in the study, or at least I returned the papers and hopes his data helps research. My concern is the obvious future kid. Failure, and transplant if and when it comes to that for him, but his overall fitting in. Being so short does not help in school. To make learning an issue he.was a.late talker 3 years old to make a 5 word sentence. Now he won't shut it. But he has adhd, and that lack of concentration and taking care of his disease in his future worries me. He is well aware of all his med and the rationale for their continued use and dose changes. It seems as if.from reading other posts the correlation of growth and learning is a factor is this disease process. Zander mom T

Posted by LadaBL
22 Jan 2015, 01:37 PM

I have the hypothesis that possibly Dent and Lowe patients don't get enough phosphorus in their bone as they hit the potential growth spurt (because they lose some through their kidney). One way to prove that is to show that the major hormone that causes release of phosphorus in the urine is below normal in Dent. So far 3/4 adult Dent patients in my study have it. Now I want to see if children (in particular) children in puberty have that as well. Growth hormone also increases phosphorus absorption in the kidney, and it's possible that that is the way it works. We don't know which effect it has on the bone of Dent kids. Lada

Posted by hamilt1
21 Jan 2015, 11:59 PM

I have three children, one with Dent's. Both of my two children without Dent's are tall...medium to extra large framed. My son with Dent's is thin, small framed, and definetly grew at a different rate. For a frame of reference, my 12 year old is 5'10 and 170 pounds. My 15 year old with Dent's is 5'6 and 110 pounds. My son also had sensory processing disorder.

View Full Thread (15 more posts)
oxalates Created by emilysorenson
Last updated 21 Jan 2015, 10:30 PM

Posted by LadaBL
21 Jan 2015, 10:30 PM

No, restriction is advised only if oxalate is elevated. The elevation could also be a result of calcium restriction in diet. Calcium should not be restricted. If less calcium is eaten, more oxalate is absorbed. My view is that possibly Dent patients do not get enough phosphorus, that is why I am studying phsophate regulating hormones for Dent in my FGF Study for Dent disease. We will hopefully learn something from it. I have just looked up our registry data. Few patients have oxalates in 50-60 range. Not most common but possible. Lada

Posted by hamilt1
21 Jan 2015, 09:52 PM

Do you recommend a low oxalate diet in Dent's even if the oxalate level is normal?

Posted by LadaBL
21 Jan 2015, 09:39 PM

High oxalates are not common for Dent. However, sometimes even levels this high can come from dietary sources, but you could have him tested for primary hyperoxaluria. It is very important to minimize oxalate in diet. Did you review it with the nephrologist or a nutritionist? High doses of vitamin C can also give you high oxalate, make sure he is not getting that. We also have a center for primary hyperoxaluria if you would need genetic testing. Where did you get with this so far? Lada

View Full Thread (1 more posts)
Community Resources
Title Description Date Link
Dent Registry

I am happy to inform everyone that Dent Registry is started at Mayo clinic. We hop that we can gather more information and advance knowledge on the disease and therapy.

 

We are looking to enrol all patients with Dent all over the world. If you are interested, please check out our website. Please feel free to ask any questions.

 

 

Lada

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.

Community Leaders

LadaBL

Hi,

 

 

I am a nephrologist (kidney doctor) who works at NYU in New York City. National Institutes of Health has sponsored research of Dent disease starting Sept 2009 which includes, and starts with, forming Registry of Dent disease patients.

 

 

Dent disease manifests usually with low molecular weight proteinuria (loss of protein in the urine) and often with kidney stones or even calcifications of kidney. Significant number of patients develop kidney failure and need dialysis or transplantation.

 

 

Registry means collection of information on individual patients which is then stored, anonymously, in one database. That allows us to analyze collected information on large group of Dent patients, which has never been done before, because physicians typically take care of only few Dent patients (usually 1-5).

 

 

Our website is http://www.rarekidneystones.org/dent, where you can look up the available information.

 

 

Contact:

 

Barb Seide| Study Coordinator | Mayo Clinic Hyperoxaluria Center | Nephrology Research | Phone: 507-293-4112 | 800-270-4637 | fax: 507-255-0770 | seide.barbara@mayo.edu | hyperoxaluriacenter@mayo.edu.

 

 

I would be happy to answer any of your questions. My email is lada.bearalasic@nyumc.org or LadaBL@yahoo.com.

 

 

Several people from this site have contacted us. Congratulations for making the initiative and moving the knowledge forward!

 

 

 

Stay strong!

 

 

Lada

 

 

 

Expert Questions

Ask a question

COTY Message
24 May 2010, 09:05 PM

COTY ANDA COOPER HAVE ALREADY BEEN SEEN THERE, AND NOW BEING A SINGLE MOM COULD NOT AFFFORD TO BEE SEEN AGAIN, THANKYOU THOUGH.

Answer

I'm sorry to hear that.

 

We are looking into finding you somebody in Nashville. Would that work for you?

COTY Message
24 May 2010, 08:20 PM

DOYOU KNOW OF ANY PEDIATRIC NEPHROLOGISTS IN OR NEAR CHATTANOOGA THAT DEAL WITH DENTS DISEASE?

Answer

I don't, but I could ask. Dr Carla Monico would be happy to see the patient at Mayo clinic. Let me know if you need contact information.

Community User List

Uncle of a brilliant young man named Coty Allen that lost his life to Dent's disease in 2014.
Meet the high standard of excellence in dentistry with Evergreen Family Dental; a reliable dental implant clinic in Mill Creek, WA at your service. Do away with your root canal treatments in Mill...
Hola me llamo mari carmen soy de españa concretamente de un pueblo de sevilla y tengo un hijo con 13 años que tiene la enfermedad de dent tipo 1
Hola soy una madre española concretamente de sevilla y tengo un niño de 13 años con la enfermedad de dent tipo 1
Son dx at 5yrs with dents.now 9 yrs old
Carrier of dents and 1 son with dents
My son, Isaac is in the process of being diagnosed with Dent's Disease. This all started with high levels of protein found in his urine during his physical for Kindergarten. His primary care...
ich bin maria

I am the mother of a 13 year old boy, from Florida, diagnosed with Dents disease in May of 2013. The disease was found by accident after a sick visit to his ped. for a upper respiratory...

I am a father of 3 boys. The eldest has had a diagnosis of Dent Disease and also suffers with Growth Hormone Defficiency
I am the mother of an 10 year old boy who has been diagnosed with Dents Disease, I would really like to hear from other people who have the condition and share information
I have a son who is 13 with Den't Disease. I think he was two years old when he was diagnosed.

 

 

We live in Yarmouth, Maine.
29 year old male from Chicago, who is diagnosed with Dent's Disease.
I have 3 children with Dents Disease which I passed onto them. My brother had end stage renal failure at 37 then a donated kidney from our dad. That eventually failed and he had a second...
My son is just now getting tested for Dent's. I want to get all the info I can.
Mother of male, born March 1992, affected with Dent's.
Son with Dent's Disease
Parents of a 9 y.o. boy with a genetic kidney disease called Dent's disease.
MY SON HAS DENTS DISEASE, HYPOPHOSPHATEMIC RICKETS, OSTEOPOROSIS, AND SEVERE ICHTHEOSIS IS THER ANYONE OUT THERE WE CAN RELATE TO AND THAT MIGHT HAVE MORE INFORMAATION FOR US. PLEASE I NEED HELP...
I am the father of a son who is diagnosed Dents disease. We live in Arnhem, The Netherlands. My son is born in 2005. The disease was discovered by accident because he was monitored for an...
Hi,

 

 

I am a nephrologist (kidney doctor) who works at NYU in New York City. National Institutes of Health has sponsored research of Dent disease starting Sept 2009 which includes, and...
My son has Dent Disease. He is 9 years old and has just been diagnosed with it. It would be great to get in touch with other families that have this.

 

 

I'm korean

 

 

My lovely son is dent's disease

 

 

I hope more information about dent's

 

 

My english is poor. But reading sentense

 

is possible

 

 

thank...
Our son Oscar was diagnosed,as far as they can diagnose, with Dents 3 years ago.He had no symptoms until he did a red wee.A week later he underwent the first of many ops to remove staghorn calculii...
My 17 yr old son has Dent's disease and it would be interesting and useful to be able to talk to others (or family members) who have this condition.
Interested in learning more about Dent's disease, since my 9 year old son has it.

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First UK meeting of Dent patients and physicians!!!

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