Official Hernia Surgery Registries

[Jack2021]

If only it was mandatory for people who’d had tissue repairs to register themselves in a specific section on this forum and then answer some basic feedback questions once a year, which were then compiled to allow forum members to see the services available nearest to them, the name of the surgeons, treatment options and associated rates of success (long term pain, other associated issues, recurrence rates, people fully back to their pre-hernia ‘normal’ etc), eventually over many years of gathered results.

I realise though that even if this was an internationally well publicised voluntary option, that it could be difficult to guarantee authenticity, as is the case when anyone currently posts on this forum about fantastic outcomes with certain surgeons, or surgeons talk about their success rates on here.

My understanding is that some countries do have official hernia surgery registries detailing hernia operations and outcomes over many years, but most don’t.

I believe Germany does, but I haven’t been able to find/access it.

I know the British Hernia Society is talking about creating one. In fact, they currently have a survey asking people for feedback about their proposed registry and here’s the link for anyone interested in completing it – https://docs.google.com/forms/d/e/1FAIpQLSfs4S5cuLpQQoZCiUvarFUMYRQwhTnslc1GaMOqX12EHhxTjg/viewform

I stumbled across it this evening.

In the further comments section at the end, I suggested:

‘For this proposed registry to be valid, it must include a section about (non-mesh) tissue repairs, so the registry is informative about all treatment options available to people with hernias.

The type of tissue repair carried out by the surgeon should also be detailed, such as Shouldice, Bassini, Desarda etc.

If such a registry was created, it would be the best possible resource for supporting patients to make an informed decision about their treatment.’

I digress! Anyway, re countries with existing registers, I don’t know if they provide the information that people looking for tissue repairs or just to be informed generally about hernia treatment options and outcomes, would like to know.

@drtowfigh, @drkang and any other doctors and forum members, can anyone signpost us to accessible registries in any countries that contain this type of information?

Many thanks

[Good intentions]

There is, apparently, a Swedish Hernia registry. It’s data was used in a recent paper. Here are relevant links.

Chronic Pain After Groin Hernia Surgery in Women

https://www.svensktbrackregister.se/en/

https://www.researchgate.net/publication/227008357_The_Swedish_hernia_register_an_eight_year_experience

[Good intentions]

There is also a Danish Registry (Database). I have seen it referenced in several papers.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5096723/

https://www.dovepress.com/the-danish-inguinal-hernia-database-peer-reviewed-fulltext-article-CLEP

[Good intentions]

There is another, supposed registry, that was created years ago by Ethicon (Johnson & Johnson) but it is a commercial marketing endeavor. The IHMR. The results have been used to promote positive aspects of their mesh products in their sales literature but the completion of the registry and report have been delayed time after time. Only positive news is released, internally.

This is one of the foundational elements of my cynicism about corporate involvement. Beware the things that have fancy powerful names.

https://clinicaltrials.gov/ct2/show/study/NCT00622583

https://ichgcp.net/clinical-trials-registry/NCT00622583

https://www.jnjmedicaldevices.com/en-US/product/ultrapro-mesh-ethicon

Excerpt (the misspellings are in the literature) –

“ULTRAPRO® Macroporous Partially Absorbable Mesh offers strength with reduced foreign body mass1,5 and may reduce the risk of patient complications compared with mircroporous mesh.2,6 In a study of patients from the International Mesh Hernia Registry (IHMR), patients demonstrated low rates of intra- and postoperative complications, such as seromas, and recurrence (<1%) after 1 year.2-4,7-12 In the same study, patients reported improvement in pain and movement limitations from baseline at 1 year postsurgery.2,3,7,8 ULTRAPRO Mesh withstands more than 2x the maximum abdominal pressure in healthy adults.13,14 ”

3. Data from a prospective, longitudinal study of 151 patients receiving open hernia repair with ULTRAPRO fat mesh from the International Hernia Mesh Registry (53.0% ventral/incisional, 39.7% inguinal, 7.3% other).

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