Dupuytren disease research questions and answers.
Dupuytren advocacy is challenging. One challenge is that many people have never heard the words Dupuytren, or Ledderhose, or Peyronie, including many who have these problems. A larger challenge is that no one knows the root biology of Dupuytren/Ledderhose/Peyronie disease – how it starts, or how to make it go away, or how to make it stay away.
These challenges – awareness and understanding – go and in hand. Research for a cure requires the participation of many Dupuytren patients, but people have to know about research to get involved. Increasingly, Dupuytren advocates use social media to raise awareness and share Dupuytren knowledge, reflected in Dupuytren FaceBook group activity. The FaceBook Dupuytren’s Disease Support Group DDSG, moderated by Leslie Wieslander Rosenthal, represents this effort by organizing interactive question and answer sessions between patients and health care professionals. As with other Facebook groups, the DDSG uses a sign-up process. This is necessary to prevent spamming and trolling, but also prevents browsing by to non-members. As a workaround, the following is a transcript of a half-hour “Coffee Talk” Q&A session between Dr. Charles Eaton and DDSG members on 1 Sept 2016. It has been only edited to remove Facebook identities and typographical errors. Enjoy.
Leslie Wieslander Rosenthal:
Dr. Charles Eaton, Executive Director, Duputyren Foundation, joins us today as a follow up to the 2016 Mid-Year Report link
This Coffee Talk will focus on answering your questions about the DupStudy. Dr. Eaton and I are currently connected by phone and I will be typing his responses for him.
Dr. Eaton is a member of the prestigious research committee that is working on the DupStudy link
Here’s a little more about his background: Dr. Eaton has board certification in general surgery, plastic surgery and hand surgery. His education included the following: Emory University – BS Physics; Washington University – MD; Boston University – General Surgery; New York University – Plastic Surgery and Hand Surgery; Microsurgery Research Centre (Melbourne Australia) – Hand and Microsurgery; University of Utah – Assistant Professor; Palm Beach County FL – hand surgery.
Dr. Eaton is a retired hand surgeon who has Dupuytren’s Disease himself and is credited with bringing Needle Aponeurotomy to this country, training many surgeons in the procedure which has now made surgery a last resort for the treatment of Dupuytren’s Disease. He is the author of many studies and book chapters on the diseases and convenes surgeons from around the world at an international conference on the disease, the latest of which took place in 2015 in the Netherlands.
Overview of The International Dupuytren Data Bank: The IDDB is a research project with a target of finding the cause and cure for Dupuytren Disease and related conditions. The IDDB is sponsored by the Dupuytren Foundation in partnership with the National Data Bank for Rheumatic Diseases. The IDDB is free for all participants, and has three phases:
1. Survey people with and without Dupuytren disease for clues about their biology. (Enroll and fill out follow-up progress surveys online). 2. Collect blood samples from those surveyed. (We’ll let you know how to do this.). 3. Compare survey results with DNA and other blood tests to develop prevention rather than procedures.
Q. Dr. Eaton, one of the critics of the DupStudy has suggested that there is a need to know if DD patients even have different blood from non-DD patients before blood biomarker testing can begin. I’m wondering if you can explain why this suggestion is not correct?
A. The answer to that is yes, I’ve reviewed prior research which has a number of small studies that show abnormalities in the blood of Dupuytren patients and these are abnormalities in tests that aren’t standard blood tests. We’re looking at special laboratory tests, some of which are only done in small academic labs. These are not commercial tests and so the logistics are difficult to perform them on a large number of people. Also, because they are unusual tests, some of them are very expensive which is why the budget is large even for a small pilot study.
Q. We need $200,000 to get started – how much money do we have so far?
A. So far we have received less than $10K for this specific project.
Q. Grant writing. How are new fundraising efforts going?
A. We have sent out initial inquiries for over 50 grants, from private foundations and are about to launch a peer to peer email fundraising campaign and are exploring options for venture capital funding.
Q. When can we expect to be called to have our blood drawn and how will that happen? Will we go to our doctor’s office? Will it be a home kit to mail back?
A. It looks as though it’s going to be next year sometime. But it’s because some of the tests can’t be done by mailing blood samples in. They have to be done in special labs. AND: some of the tests are incredibly expensive to perform.
Q. Will the first round of tests for the blood biomarker be equal numbers of men and women? I see that there are 70% women enrolled. Will all of the different rounds of studies aim to have half women and half men? I would think the hormonal differences in women might skew the results?
A. At this point, the ratio of men to women is going to be determined by the ratio of men to women who have severe Dupuytren disease and I don’t have that number for the current enrollees.
Q. We know you have been dealing with a great many technical challenges that are nearly worked out. one being the email database. Do you have an idea of when patients can expect to get an email notification about their participation in the study and what they will need to do next with respect to their blood samples?
A. The plan is to do follow-up surveys twice a year and to have that go on for years. People should be notified by email of this follow-up survey this month and the sender of that survey will be the Arthritis Research Foundation – although they have several different names so we will have to check on the exact name of the sender. The laboratory blood test notifications will go out when we have funding.
Q. How is the target/pilot study going?
A. The target/pilot study is what we have been talking about – it’s just the first round of the IDDB. The IDDB is the same as the DupStudy. The IDDB is the larger project that will be rolled out in stages and this first study with the first 100 patients is the pilot study for the overall project.
A. A huge study of 10,000 patients is unaffordable and so we will proceed in stages that we can afford and what we learned from the smaller initial studies will let us do larger studies in a more cost effective way.
Q. How can we each do on the ground help with enrollment of the study?
A. Getting the word out by telling your friends, posting on social media. Our biggest challenge is lack of public awareness. Write to your local newspapers. There’s been a lot of discussion about which procedure is better than other procedures, but the bigger problem is that people haven’t heard of Dupuytren Disease in the first place.
A. In closing, Dr. Eaton would like to share that he is thrilled to have the opportunity to drop by today and answer these important questions and we are discussion taking this transcript of today’s Coffee Talk and converting it to a blog post by Dr. Eaton and that will then be posted on the DDSG Website. Do we have one last question for Dr. Eaton before he gets on with his day?
Q. Happy to hear that registration glitches are being worked on. Will you speak to that?
A. Leslie posted a letter from Rebecca Schumacher, Executive Director of the National Data Bank for Rheumatic Diseases earlier today that covered this exact subject. I hope you can refer to that for your answers. We are working with specialists to speed up slow website issues that we have been experiencing recently on the Foundation website.
Q. One patient question?
Q. What is the respected process in general before, during and after NA procedures. Such as: pre-surgery massage, cord releasing, post surgery splinting and treatments recommended after NA? Is it the patient’s responsibility to release the cords afterward or the surgeons to release the cords during the procedure. Thank you so much Dr. E. For all your phenomenal dedication to this group and your mission for this disease.
A. Thank you for your question. I suggest that you refer to Dr. Pess’ previous answers provided on this forum to that question – I believe they are stored in your files – and it’s the surgeon’s responsibility to release the cord and the patient’s responsibility to follow the surgeon’s instructions after release. Each surgeon may vary in their approach and this variation is ultimately how we find out what the best after care is for the patient.
Q. Thank you, Dr. Eaton! For all you do for each one of us!
A. Thank you for this great teamwork and it’s only by working together that we are going to find a cure for Dupuytren Disease!