#iddb

New Post has been published on https://dupuytrens.org/2020-iddb-progress-and-findings/

2020 IDDB Progress and Findings

2020 IDDB Progress and Findings

The International Dupuytren Data Bank is now in its fifth year with 4465 enrollees from 48 countries. There’s now enough data to begin looking for trends and new insights.

We’ve begun collecting blood samples from select enrollees for the Dupuytren Blood Biomarker Pilot Study. Blood sample collection is on hold until COVID-19 related restrictions ease: we’re hopeful and rebooking blood draw appointments for June.

There are three good things coming out of the COVID-19 challenge:

One: There’s now a little extra time for you to enroll in the IDDB for a chance to participate in the Dupuytren Blood Biomarker Pilot Study! If you haven’t signed up, now is the time: Enroll in the IDDB

Two: You have a little extra time to browse the progress report of the IDDB: April 2020 IDDB Progress Report

Three: The IDDB follow up survey is about to go out to all IDDB enrollees. You don’t want to miss this! Log in and make sure your contact information is up to date: Current enrollees confirm your contact information

Stay tuned and stay well!

New Post has been published on https://dupuytrens.org/2020-the-year-of-solving-the-puzzle/

2020: The year of solving the puzzle!

I’m optimistic 2020 will be the year of progress solving the Dupuytren puzzle. Dupuytren seems at times a jigsaw puzzle with too many pieces. Pieces from other puzzles. Pieces that look as though they should fit, but don’t. Pieces that belong in one location, but seem to fit in many different locations.

One strategy to solve a jigsaw puzzle is to first find the four corner pieces. They give clues to look for the next pieces. We already have two corner pieces of the Dupuytren puzzle: the biology of tissues removed at surgery and the demographics of people who have developed Dupuytren. The third corner piece of the puzzle is a snapshot of Dupuytren activity in the blood to predict whether Dupuytren will or won’t develop, whether it will or won’t progress, and whether it does or doesn’t respond to medical treatment. This piece will come from the blood biomarker study of the IDDB, the International Dupuytren Data Bank. The final fourth corner piece is a list of medicines to modify Dupuytren biology to prevent it from developing, progressing, or recurring after a corrective procedure. We need the first three corners of the puzzle in place to figure out where to start looking for the final fourth corner piece.

The pilot study – the third corner piece – is underway. Email invitations are going out now to potential blood draw participants enrolled in the IDDB. Of the 4200 IDDB enrollees, 82 met the stringent selection criteria based on the age of onset, locations of disease, family history details, and home address. Of these, 50 will be confirmed on a first-come-first-serve basis. 50 more participants without Dupuytren or a family history of Dupuytren will act as controls.

If you enrolled in the IDDB study and meet the selection criteria, emails are going out.

If you don’t get an invitation, don’t panic. This is a small pilot study, not a large definitive study. This is the study that we need to do to get the ball rolling for the definitive study – to provide preliminary data to bring to the NIH to make the case for the NIH to set up funding for large definitive studies. This pilot study is critical to progress in Dupuytren research, which currently has no federal funding. It’s taken years of fundraising and saving to meet the $400,000 laboratory budget for this pilot study. Larger scale research needs large federal grants. This study is the cornerstone of the path to jumpstart federal funding for the next research with far more participants.

This work has many moving parts. It’s taken sustained hard work and sustained financial support from the Dupuytren community to get this far. We are here. It is happening! I’m deeply grateful to everyone who has supported and who continues to support this work. Your participation – your ideas, your enrollment, your funding – have set the stage for 2020 to be the year we start solving the Dupuytren puzzle – together.

Thanks and Happy New Year!

New Post has been published on https://dupuytrens.org/dupuytren-hand-therapy-podcast1/

Dupuytren Hand Therapy Podcast 1/2

Susan Weiss OTR/L CHT just released the first of a 2-part audio podcast interview with Dupuytren Research Group’s Dr. Charles Eaton, discussing Dupuytren disease from a hand therapy perspective. Very interesting, can’t wait for the second installment!

New Post has been published on https://dupuytrens.org/dupuytren-outreach-milestone/

Dupuytren Outreach Milestone

Dupuytren Research Group Outreach and Awareness programs have reached a new milestone: 1000 subscribers to Dupuytren.tv, the Dupuytren Research Group video podcast / YouTube channel. It’s actually a big deal: we don’t feature cats or dogs, cute babies, social media influencers, hot spokesmodels, “one weird trick” clickbait, video game reviews, celebrities behaving badly, or other low hanging fruit. We’re just putting it out there to raise awareness about the problem of Dupuytren disease and the need to support research for a cure. It’s important, not sexy. It’s true, not sensational. It spans generations, not a fad. We’re advocating, not selling a product. And we’re making progress, step by step. We plan to invite 100 selected enrollees in the International Dupuytren Data Bank to participate in our blood test pilot study before this year-end. This progress is only possible because of support from the global Dupuytren community. Our future progress depends on the ongoing support of this community. Keep this in mind as you consider your year-end giving. We’re not here to lecture you or to sell you something. We’re doing this because we are Dupuytren patients and our futures are connected. Little steps, big steps, they are all steps toward a better future for all of us affected by Dupuytren disease and related conditions.

New Post has been published on https://dupuytrens.org/its-dupuytrens-birthday/

It's Dupuytren's Birthday!

Happy Birthday, Dupuytren!

It may not seem that long ago, but Guillaume Dupuytren was born just 242 years ago today on Oct. 5, 1777. Dupuytren disease goes by his name because of the lecture he gave and the surgery he performed for this condition at Hôpital-Dieu in Paris on the 5th of December 1831, just 188 years ago.

It may not seem that long ago in the world of Dupuytren because some things haven’t changed much. Sure, anesthesia was first used 15 years after Dupuytren’s famous operation, so surgery is no longer a tense contest between how fast the surgeon can operate and how much pain the patient can tolerate. And antiseptic technique was first used in surgery 35 years after Dupuytren’s famous operation, lessening the chance that patients would develop surgical infections. And penicillin, the first antibiotic, came into use 100 years after Dupuytren’s famous operation, dramatically lowering the odds that patients would die if they did develop a surgical infection.

So there’s that. Yes, a few things have changed. But the fundamental way we treat Dupuytren hasn’t changed: wait for a bent finger, treat the bend, and repeat.

FL Representative David Silver presenting Dr. Eaton with Recognition of October as Dupuytren Disease awareness month.

This will change. One of the big drivers of change is awareness. Dupuytren Research Group is helping raise awareness through many channels including state and federal government. October has been recognized as Dupuytren disease awareness month by the Florida House of Representatives. Earlier this week, Rep David Silver presented the Dupuytren Research Group a formal certificate of this recognition, shown here with Dr. Eaton accepting the certificate.

Another big driver of change is rapid advances in technology. The research that went into the first human whole-genome sequencing – a full map of one person’s DNA – took 13 years and cost 2.3 billion dollars. Today, whole-genome sequencing can be performed in less than a day for a few thousand dollars. Similar breakthroughs are happening for all biologic systems, not just DNA.

What this means is we are in the right place at the right time to make a fundamental change in the way that Dupuytren disease is diagnosed, staged, and treated. The technology to do this either wasn’t available or wasn’t affordable only 10 years ago when the Dupuytren Foundation was first founded. A lot has changed, and more to come.

I fully expect to begin inviting selected International Dupuytren Data bank enrollees to participate in the Dupuytren circulating biomarker pilot study within the next few months – this year. This will set the stage to better understand Dupuytren biology, taking the first steps toward a Dupuytren blood test. The plans for this project solidified only five years ago. It seems like a long time, but it’s not. It’s almost here. So, thanks, birthday boy Guillaume Dupuytren, for giving us a name for this problem disease – because identifying a problem is the first step to correcting it.

New Post has been published on https://dupuytrens.org/dupuytren-and-rare-disease-research/

Dupuytren and Rare Disease Research

Is Dupuytren disease common or rare?

I recently attended the Rare Drug Development Symposium in Philadelphia. Why? Is Dupuytren really a rare disease? Yes and no. Mild Dupuytren is common but very severe Dupuytren is rare – in the same way that cats are common but chimeric cats with crazy colors are rare.

What does “mild” or “severe” Dupuytren really mean? People usually think of severity as severely bent fingers. While it’s true that fingers that are very bent don’t function as well and are less likely to be made straight with treatment, the more important factor is biologic severity. Biologically severe Dupuytren is prone to recurrence after treatment regardless of how bent the fingers are or the type of treatment. Biologically severe Dupuytren is also called treatment-resistant Dupuytren. It’s more likely when a person’s story has certain details: young when diagnosed, a parent or sibling with Dupuytren, disease outside the palm such as knuckle pads or Ledderhose. These details are called “Dupuytren diathesis factors“. They’re not perfect predictors. Some people with diathesis factors have mild Dupuytren. Some with no diathesis factors have terrible problems with Dupuytren recurrence. Right now, there’s no sure way to tell whether someone has treatment-resistant Dupuytren until after treatment. Retreatment for recurrence is the real elephant in the room. The problem with retreatment is that it is progressively less effective and riskier. One in four people who have had three open Dupuytren surgeries on the same finger will have suffered a permanent surgical complication along the way.

Overall, Dupuytren is common, affecting ten million Americans and millions more worldwide. Most people with Dupuytren have a mild version. They may have a lump or a slight finger bend as the only issue of their lifetime. They might have one finger affected, have a successful procedure, and never another problem. At any one time, four out of five people with Dupuytren only have a lump in their palm or a slightly bent finger. Only one in five people with Dupuytren have fingers bent enough to even consider treatment.

The severe version of Dupuytren isn’t common. Only a few percent of people with Dupuytren – a few hundred thousand Americans – have severe treatment-resistant disease. Severe Dupuytren is considered a rare disease, and because there is no effective long-term treatment it’s also classified as an orphan disease. This is why it makes sense to explore rare disease research tools to develop better Dupuytren treatments.

A common obstacle in rare disease treatment research is a lack of understanding of the root biology, not knowing where to start even if it’s clearly a genetic issue. This is true for Dupuytren. Clues to Dupuytren biology are scattered across systems involved in immune mechanisms, inflammation, effects of aging, gender, injury, and normal body maintenance. For Dupuytren, stumbling across an effective biological treatment through blind trial and error is unlikely, as the last 200 years of failure have shown. Recognizing this problem is the first step in moving past it.

Which leads to this: I bring good news from the Rare Drug Development Symposium. Even if we don’t currently understand the complete biology of Dupuytren, there is a possible way to identify existing drugs which might also work on Dupuytren disease. Most drugs have a variety of effects on different areas of biology. What we call these effects depends on context and marketing. If a drug effect helps a disease, it’s called a therapeutic effect. If it does something else, it’s called a side effect. Sometimes what’s first considered a side effect of a drug is more valuable than the original use. This is the path that repurposed aspirin from anti-inflammatory to blood thinner, thalidomide from sleeping pill to the treatment of leprosy and multiple myeloma, and sildenafil from blood pressure medicine to Viagra. The process of using a side effect of an existing drug to treat a different disease altogether is called drug repurposing or repositioning.

There were several examples of drug repurposing given at the Rare Drug Development Symposium. Most impressive was how to find unexpected drug candidates to repurpose. The traditional approach to finding drugs is to compare what’s known about the cause and effect biology of a disease with a class of drugs known to act on this biology. The symposium demonstrated a fascinatingly different approach for drug discovery. Rather than waiting to understand all of the biologies of a disease, researchers used brute-force computer analysis. Researchers gathered all gene and protein related tests of a disease, whether or not they were thought to contribute directly to the disease. They compared this data with a database of all known molecular effects of over 13,000 drugs – whether or not they were thought to act on this disease. They then studied the list of matches and why they matched. In one case this approach matched a rare treatment-resistant pediatric brain tumor with a 250-year old heart drug, now being tested to improve outcomes.

This approach dovetails perfectly with the Dupuytren Research Group International Dupuytren Data Bank (IDDB). The core cause-and-effect biology of Dupuytren is still not known. Our upcoming pilot study will collect gene and protein data to develop a blood test to measure the response to drug treatment. At the same time, this same data can be used to search for existing drugs to repurpose for Dupuytren disease. We are clearly on the fastest logical path to a breakthrough in Dupuytren care.

New Post has been published on https://dupuytrens.org/ten-things-to-know-about-dupuytren/

Ten Things to Know About Dupuytren

There are many reasons to know about Dupuytren disease. Ten of them are on your hands.

When Healthgrades.com wanted to know more about Dupuytren disease, they reached out to the Dupuytren Research Group. See the Healthgrades Dupuytren review Dupuytren’s Contracture: 10 Things Doctors Want You to Know featuring Dupuytren specialists on the Dupuytren Research Group Board of Directors.

Everyone needs to know about Dupuytren disease. If you have it, your children and grandchildren are at greater risk. Doctors need a Dupuytren blood test to make progress toward a cure. The Dupuytren Research Group is doing research to develop this blood test. Our laboratory budget is $400,000. We’re ready to start testing as soon as we’re funded. We need to raise the final $100,000 and we need your help to make this happen this year.

Support Dupuytren Research Now

See more Healthgrades coverage of Dupuytren disease: 8 Surprising Facts About Dupuytren’s Contracture Treatment Options for Dupuytren’s Contracture What to Expect After a Dupuytren’s Contracture Diagnosis