Włóknienie płuc idiopatyczne
Epidemiologia

Idiopatyczne włóknienie płuc (IPF) jest najczęstszą i najcięższą postacią idiopatycznych zapaleń śródmiąższowych płuc, charakteryzującą się przewlekłym, postępującym włóknieniem tkanki śródmiąższowej o nieznanej etiologii, głównie u osób powyżej 50. roku życia. Globalna zapadalność wynosi około 10,7 przypadków na 100 000 osobolat u mężczyzn i 7,4 na 100 000 u kobiet, a chorobowość szacowana jest na 20 przypadków na 100 000 u mężczyzn i 13 na 100 000 u kobiet. W Europie diagnozuje się około 40 000 nowych przypadków rocznie, z najwyższą zapadalnością w Wielkiej Brytanii (4,6-8,65/100 000). W USA chorobowość wzrosła z 202,2 do 494,5 przypadków na 100 000 w latach 2001-2011, a roczna zapadalność utrzymuje się na poziomie około 93,7/100 000 osobolat. IPF częściej dotyka mężczyzn, a ryzyko wzrasta wraz z wiekiem, szczególnie u osób ≥75 lat (27,1-76,4/100 000 osobolat). Czynniki ryzyka obejmują palenie tytoniu, narażenia środowiskowe, patogeny mikrobiologiczne oraz predyspozycje genetyczne. Średni czas przeżycia po rozpoznaniu wynosi 3-5 lat, a śmiertelność stale rośnie, z 67 843 zgonami w USA w latach 2020-2022, gdzie IPF była przyczyną podstawową lub współistniejącą.

Epidemiologia idiopatycznego włóknienia płuc

Idiopatyczne włóknienie płuc (IPF) jest najczęstszą postacią wśród idiopatycznych zapaleń śródmiąższowych płuc. Charakteryzuje się przewlekłym, postępującym włóknieniem tkanki śródmiąższowej płuc o nieznanej przyczynie, występującym głównie u osób starszych. Zarówno zapadalność, jak i chorobowość na IPF wydają się wzrastać w ostatnich dekadach1. Określenie epidemiologii IPF jest trudnym zadaniem ze względu na nieostre definicje, zmieniające się wytyczne dotyczące kodowania i konsensusy ekspertów, wysokie niedodiagnozowanie, które często występuje bardzo późno w naturalnym przebiegu choroby, a także status choroby rzadkiej12.

Występowanie IPF na świecie

IPF stanowi od 20% do połowy wszystkich przypadków chorób śródmiąższowych płuc (ILD) i jest najczęstszą oraz najcięższą postacią idiopatycznych zapaleń śródmiąższowych płuc (IIP), grupy ILD o nieznanej przyczynie34. Idiopatyczne włóknienie płuc uznawane jest za chorobę rzadką (występującą u mniej niż 5 na 10 000 osób rocznie), jednak jej obciążenie jest wysokie4. Tylko w Europie każdego roku diagnozuje się około 40 000 nowych przypadków3.

Według szacunków, na świecie zapadalność na IPF wynosi około 10,7 przypadków na 100 000 osobolat dla mężczyzn i 7,4 przypadków na 100 000 osobolat dla kobiet. Chorobowość IPF szacuje się na około 20 przypadków na 100 000 osób dla mężczyzn i 13 przypadków na 100 000 osób dla kobiet56. Według Narodowego Instytutu Zdrowia (NIH), w Stanach Zjednoczonych IPF dotyka około 100 000 osób, a każdego roku diagnozuje się około 30 000 do 40 000 nowych przypadków78.

Zapadalność i chorobowość w różnych regionach

Obserwuje się znaczne zróżnicowanie wskaźników chorobowości i zapadalności w zależności od regionu geograficznego9. Skorygowane oszacowania zapadalności (na 10 000 osób) w badaniach międzynarodowych wahają się od 0,35 do 1,30 w krajach Azji i Pacyfiku, od 0,09 do 0,49 w Europie oraz od 0,75 do 0,93 w Ameryce Północnej. Skorygowane wskaźniki chorobowości wahają się od 0,57 do 4,51 w krajach Azji i Pacyfiku, od 0,33 do 2,51 w Europie oraz od 2,40 do 2,98 w Ameryce Północnej9.

W Europie najwyższe wskaźniki IPF odnotowywane są w Wielkiej Brytanii, gdzie zapadalność wynosi od 4,6 do 8,65 przypadków na 100 000 osób rocznie, a każdego roku diagnozuje się około 6000 nowych przypadków10. W badaniu przeprowadzonym w hrabstwie Olmsted w Minnesocie w latach 1997-2005, dostosowane do wieku i płci wskaźniki zapadalności na IPF wśród mieszkańców w wieku 50 lat lub starszych wahały się od 8,8 przypadków na 100 000 osobolat (przy wąskich kryteriach diagnostycznych) do 17,4 przypadków na 100 000 osobolat (przy szerokich kryteriach)11.

W retrospektywnym badaniu populacji objętej programem Medicare w Stanach Zjednoczonych (w większości ≥65 lat) stwierdzono, że chorobowość IPF wzrosła z 202,2 przypadków na 100 000 w 2001 roku do 494,5 przypadków na 100 000 w 2011 roku, przy czym roczna zapadalność utrzymywała się na poziomie 93,7 przypadków na 100 000 osobolat123.

Trendy czasowe i zróżnicowanie geograficzne

Trendy w zakresie chorobowości i zapadalności na IPF wydają się wykazywać wzrost na przestrzeni czasu13. Globalna zapadalność na IPF jest szacowana na około 10 przypadków na 100 000 osób rocznie i jest rzadka u osób poniżej 50. roku życia, natomiast częściej występuje od szóstej dekady życia13. Choroba częściej dotyka mężczyzn niż kobiety i może być obserwowana we wszystkich rasach i grupach etnicznych, choć prawdopodobnie z dużą zmiennością14.

Śmiertelność z powodu IPF wydaje się stale wzrastać na całym świecie. W 2014 roku oszacowano między 28 000 a 65 000 zgonów w Europie oraz między 13 000 a 17 000 zgonów w Stanach Zjednoczonych144. Badanie Centrum Kontroli i Prewencji Chorób (CDC) wykazało, że w latach 2020-2022 odnotowano 67 843 zgony, w których IPF wymieniono jako podstawową (38 869 lub 57,3%) lub współistniejącą (28 974 lub 42,7%) przyczynę, co stanowiło 0,7% z 9 738 271 zgonów15.

W badaniu populacji weteranów w USA zaobserwowano znaczący wzrost zapadalności i chorobowości w latach 2010-2019. Chorobowość wzrosła z 276 przypadków na 100 000 w 2010 roku do 725 przypadków na 100 000 w 2019 roku, a roczna zapadalność wzrosła z 73 przypadków na 100 000 osobolat w 2010 roku do 210 przypadków na 100 000 osobolat w 2019 roku16.

Czynniki ryzyka i charakterystyka demograficzna

Do głównych czynników ryzyka związanych z IPF należą10:

Choroba występuje głównie u osób starszych – chorobowość IPF wzrasta wraz z wiekiem, a większość pacjentów ma ponad 50 lat w momencie diagnozy, z wyższym odsetkiem mężczyzn niż kobiet10. Około dwie trzecie osób z rozpoznanym IPF ma co najmniej 60 lat w momencie diagnozy18. Narażenie zawodowe na czynniki środowiskowe przyczynia się do około 26% wszystkich przypadków IPF (frakcja przypisana populacji – PAF)17.

Badania wskazują, że zapadalność IPF u osób w wieku poniżej 55 lat wynosi zaledwie 0,4-1,2 przypadków na 100 000 osobolat, podczas gdy u osób w wieku 75 lat lub starszych jest znacznie wyższa i waha się od 27,1 do 76,4 przypadków na 100 000 osobolat18. Ryzyko IPF u osób w wieku 75 lat lub starszych jest ośmiokrotnie wyższe niż u osób w wieku 45-54 lat19.

Rejestry IPF i wyzwania badawcze

Ze względu na rzadkość występowania IPF, dokładne dane epidemiologiczne są trudne do uzyskania i często ograniczone metodologicznymi słabościami20. Badania oparte na rejestrach krajowych mogą dostarczać bardziej wiarygodnych danych na temat IPF21. Obecnie rejestry krajowe, każdy z własną metodologią, utworzono w Niemczech, Szwecji, Wielkiej Brytanii, Grecji, Hiszpanii, Australii, Indiach i Chinach22.

W Ameryce Łacińskiej utworzono pierwszy regionalny rejestr IPF – REFIPI (Latin American Registry of Idiopathic Pulmonary Fibrosis), który ma na celu określenie charakterystyki demograficznej, klinicznej, funkcjonalnej i radiologicznej pacjentów z IPF w Ameryce Łacińskiej w momencie diagnozy i w przebiegu choroby, a także rejestrowanie stosowanych terapii, ich skuteczności i bezpieczeństwa w praktyce klinicznej22.

Rejestry kliniczne umożliwiają zwiększenie dokładności identyfikacji przypadków i bardziej kompleksowe gromadzenie danych, co jest szczególnie pomocne w złożonych schorzeniach, takich jak włóknienie płuc. Badanie epidemiologii przy użyciu rejestrów klinicznych jest jednak ograniczone przez koszty wymagane do ich tworzenia i utrzymania, ewoluujące kryteria diagnostyczne, które mogą wpływać na identyfikację przypadków, oraz błąd skierowania, ponieważ te bazy danych często znajdują się w ośrodkach specjalistycznych23.

Wpływ na zdrowie publiczne i prognozy

IPF ma istotny wpływ na zdrowie publiczne zarówno pod względem jakości życia pacjentów, jak i obciążenia systemów opieki zdrowotnej. Pomimo że jest to choroba rzadka, jej wpływ jest prawdopodobnie niedoceniany zarówno pod względem występowania (tj. zapadalności, chorobowości), jak i wpływu na zdrowie publiczne (tj. kosztów opieki zdrowotnej i wykorzystania zasobów)24.

Prognoza dla pacjentów z IPF jest niekorzystna, a średni czas przeżycia po diagnozie wynosi od trzech do pięciu lat25. Ryzyko zgonu wzrasta o 58% dla kobiet i 64% dla mężczyzn6. W Kanadzie 4-letnie ryzyko zgonu u pacjentów z IPF wynosi 41%, a jakość życia z IPF po 2 latach jest niższa niż w przypadku przewlekłej obturacyjnej choroby płuc w stadium IV według klasyfikacji GOLD26.

Badania wskazują, że zachorowalność i śmiertelność z powodu IPF wydają się rosnąć, a przewiduje się, że chorobowość będzie dalej wzrastać wraz ze starzeniem się populacji24. Według prognoz GlobalData, liczba zdiagnozowanych przypadków incydentalnych IPF w siedmiu głównych rynkach (7MM: USA, Francja, Niemcy, Włochy, Hiszpania, Wielka Brytania i Japonia) wzrośnie z 28 301 przypadków w 2019 roku do 32 997 przypadków w 2029 roku, przy średnim rocznym wskaźniku wzrostu wynoszącym 1,66%2527.

Liczba zdiagnozowanych przypadków występujących IPF w 7MM wzrośnie ze 130 822 przypadków w 2019 roku do 153 747 przypadków w 2029 roku, przy średnim rocznym wskaźniku wzrostu wynoszącym 1,75%. Całkowita liczba przypadków występujących IPF w 7MM wzrośnie z 201 698 przypadków w 2019 roku do 237 113 przypadków w 2029 roku, przy średnim rocznym wskaźniku wzrostu wynoszącym 1,76%2827.

Choroby współistniejące i powikłania

Pacjenci z IPF często cierpią na choroby współistniejące, które mogą wpływać na przebieg kliniczny i rokowanie. Do najczęstszych chorób współistniejących należą29:

  • Refluks żołądkowo-przełykowy (GERD)30
  • Bezdech senny30
  • Nadciśnienie płucne30

Najczęstszym powikłaniem występującym w IPF jest hipoksemia, czyli niski poziom tlenu we krwi, co często wymaga zależności od tlenoterapii uzupełniającej. Zaostrzenia, czyli pogorszenie objawów, są kolejnym z głównych powikłań życia z IPF. Ostre zaostrzenie zazwyczaj występuje po infekcji, niewydolności serca lub zatorowości płucnej, chociaż może również wystąpić bez znanej przyczyny7.

Inne poważniejsze powikłania, które mogą się pojawić, to rozwój zakrzepów krwi w płucach, nadciśnienie w sercu lub płucach, a nawet rak płuc7. Około 15-20% pacjentów doświadcza ostrych zaostrzeń, które są zwykle ciężkie i mogą być śmiertelne31.

Badanie przeprowadzone w Korei Południowej wykazało, że chorobowość wielu chorób współistniejących wzrosła ponad dwukrotnie w ciągu trzech lat od diagnozy IPF, z wyjątkiem choroby niedokrwiennej serca i zastoinowej niewydolności serca32. Wyższy wskaźnik chorobowości współistniejących (CCI≥4) był związany ze zwiększoną liczbą hospitalizacji i zwiększonymi całkowitymi kosztami medycznymi, co sugeruje, że choroby współistniejące mogą wpływać na przebieg kliniczny IPF32.

Wyzwania w badaniach epidemiologicznych IPF

Badanie epidemiologii IPF napotyka na szereg wyzwań metodologicznych. Do głównych problemów należą33:

  • Heterogeniczność etiologii33
  • Złożoność diagnozy i późne jej postawienie34
  • Niska liczba zdiagnozowanych pacjentów33
  • Metody stosowane do retrospektywnej analizy baz danych pacjentów33
  • Zmienne definicje przypadków stosowane w różnych badaniach9

Z powodu tych ograniczeń obserwuje się dużą zmienność wskaźników chorobowości i zapadalności w badaniach krajowych i międzynarodowych4. Biorąc pod uwagę trudności diagnostyczne, zaktualizowane kryteria diagnostyczne i różnice w metodologiach badań, istnieje znaczna heterogeniczność między badaniami dostarczającymi szacunkowe dane epidemiologiczne w IPF, co wpływa na zrozumienie globalnego obciążenia chorobą9.

Wskaźniki zapadalności i chorobowości IPF na świecie są zmienne, nawet po dokonaniu możliwych korekt statystycznych uwzględniających różnice między badaniami9. Idealnie próba badawcza powinna być duża, aby zweryfikować diagnozę kliniczną poprzez przegląd dokumentacji medycznej21.

Dane epidemiologiczne dotyczące IPF są uzyskiwane przy użyciu różnych źródeł danych. W przypadku tych, które korzystają z baz danych roszczeń, ważne jest rozróżnienie między specyficznymi a niespecyficznymi definicjami przypadków IPF, ponieważ szacunki mogą drastycznie się różnić w zależności od zastosowanych definicji9.

Biorąc pod uwagę negatywne rokowanie związane z IPF, uzasadnione jest przeprowadzenie dalszych badań epidemiologicznych, które pomogą zidentyfikować pacjentów z ILD, u których może rozwinąć się fenotyp postępującego włóknienia, i umożliwić skuteczne zarządzanie kliniczne33.

Podsumowanie aktualnych trendów

Na podstawie dostępnych danych można stwierdzić, że globalna zapadalność na IPF wynosi około 10 przypadków na 100 000 osób rocznie, przy czym choroba rzadko występuje u osób poniżej 50. roku życia i jest częstsza od szóstej dekady życia. IPF częściej dotyka mężczyzn niż kobiety i może być obserwowana we wszystkich rasach i grupach etnicznych, choć z dużą zmiennością13.

Trendy w zakresie chorobowości i zapadalności na IPF są rosnące13. Wzrost liczby pacjentów na całym świecie może być przypisywany, między innymi, starzeniu się populacji, większej świadomości choroby i ulepszonym narzędziom diagnostycznym9.

W oparciu o kraje uwzględnione w analizach, skorygowana zapadalność i chorobowość IPF mieści się w zakresie odpowiednio 0,09-1,30 i 0,33-4,51 na 10 000 osób9. Według tych szacunków chorobowości, IPF pozostaje chorobą rzadką we wszystkich krajach z wyjątkiem Korei Południowej9.

W nadchodzących latach przewiduje się dalszy wzrost zarówno zapadalności, jak i chorobowości na IPF, co podkreśla potrzebę lepszego zrozumienia epidemiologii choroby, jej czynników ryzyka oraz opracowania skuteczniejszych strategii diagnostycznych i terapeutycznych28.

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  1. 12.04.2026
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Materiały źródłowe

  • #1 Idiopathic Pulmonary Fibrosis: Epidemiology, Natural History, Phenotypes
    https://pmc.ncbi.nlm.nih.gov/articles/PMC6313500/
    Idiopathic pulmonary fibrosis (IPF) is the most common of the idiopathic interstitial pneumonias. It is characterized by a chronic, progressive, fibrotic interstitial lung disease of unknown cause that occurs primarily in older adults. Its prevalence and incidence have appeared to be increasing over the last decades. […] Determining the epidemiology of IPF is a difficult task. Idiopathic pulmonary fibrosis shares problems and limitations with other chronic respiratory diseases, all suffering from blurred definitions, changing coding guidance and expert consensus, high under-diagnosis which often occurs very late in their natural history, as well as the status of rare disease occurrence. Overall, it makes determining and quantifying the distribution of IPF (and its determinants) in time and space a complex issue.
  • #2 Idiopathic Pulmonary Fibrosis: Epidemiology, Natural History, Phenotypes
    https://www.mdpi.com/2076-3271/6/4/110
    Idiopathic pulmonary fibrosis (IPF) is the most common of the idiopathic interstitial pneumonias. It is characterized by a chronic, progressive, fibrotic interstitial lung disease of unknown cause that occurs primarily in older adults. Its prevalence and incidence have appeared to be increasing over the last decades. […] Determining the epidemiology of IPF is a difficult task. Idiopathic pulmonary fibrosis shares problems and limitations with other chronic respiratory diseases, all suffering from blurred definitions, changing coding guidance and expert consensus, high under-diagnosis which often occurs very late in their natural history, as well as the status of rare disease occurrence. Overall, it makes determining and quantifying the distribution of IPF (and its determinants) in time and space a complex issue. We aim to summarize the available evidence on the incidence, mortality and burden of IPF globally and with other levels of granularity, notwithstanding the fact that the results will contain large degree of uncertainty.
  • #3 Idiopathic Pulmonary Fibrosis: Epidemiology, Natural History, Phenotypes
    https://pmc.ncbi.nlm.nih.gov/articles/PMC6313500/
    IPF accounts for 20% to half of all cases of interstitial lung disease (ILD), and represents the most frequent and severe of the idiopathic interstitial pneumonias (IIPs), a group of ILDs of unknown cause. Idiopathic pulmonary fibrosis is considered a rare disease (occurring in less than 5 per 10,000 person-years), yet its burden is high. In Europe alone, approximately 40,000 new cases are diagnosed each year. […] Within ILD conditions, IPF accounts for 1737% of all ILD diagnoses. However, a large variability of prevalence and incidence rates is observed in national and international studies due to a number of limitations. […] A study of USA Medicare beneficiaries aged 65 years observed IPF rates higher than previously stated (incidence of 93.7 cases per 100,000/year, with a prevalence from 202.2 cases per 100,000 in 2001 to 494.5 cases per 100,000 in 2011).
  • #4 Idiopathic Pulmonary Fibrosis: Epidemiology, Natural History, Phenotypes
    https://www.mdpi.com/2076-3271/6/4/110
    IPF accounts for 20% to half of all cases of interstitial lung disease (ILD), and represents the most frequent and severe of the idiopathic interstitial pneumonias (IIPs), a group of ILDs of unknown cause. Idiopathic pulmonary fibrosis is considered a rare disease (occurring in less than 5 per 10,000 person-years), yet its burden is high. In Europe alone, approximately 40,000 new cases are diagnosed each year. […] Within ILD conditions, IPF accounts for 17–37% of all ILD diagnoses. However, a large variability of prevalence and incidence rates is observed in national and international studies due to a number of limitations. […] Mortality from IPF appears to increase steadily worldwide, even considering the abovementioned overarching underestimation. In 2014, between 28,000 and 65,000 deaths in Europe and between 13,000 and 17,000 deaths in the United States were estimated.
  • #5 Idiopathic Pulmonary Fibrosis (IPF): Practice Essentials, Background, Pathophysiology
    https://emedicine.medscape.com/article/301226-overview
    The age-adjusted and sex-adjusted prevalence among residents aged 50 years or older ranges from 27.9 cases per 100,000 persons (narrow-case criteria) to 63 cases per 100,000 persons (broad-case criteria). […] Whether the incidence and prevalence of idiopathic pulmonary fibrosis are influenced by geographic, ethnic, cultural, or racial factors is unclear. […] Worldwide, the incidence of idiopathic pulmonary fibrosis is estimated to be 10.7 cases per 100,000 person-years for males and 7.4 cases per 100,000 person years for females. The prevalence of idiopathic pulmonary fibrosis is estimated to be 20 cases per 100,000 persons for males and 13 cases per 100,000 persons for females. […] Epidemiologic data from large, geographically diverse populations are limited, and, therefore this data cannot be used to accurately determine the existence of a racial predilection for idiopathic pulmonary fibrosis.
  • #6 Azthena logo with the word Azthena
    https://www.news-medical.net/health/What-is-Idiopathic-Pulmonary-Fibrosis.aspx
    On a global basis, there are estimated to be 10.7 cases of idiopathic pulmonary fibrosis per 100,000 persons for males and 7.4 cases for females. The prevalence of the condition is approximately 20 cases per 100,000 population for males and 13 cases for females. […] There is a poor prognosis for patients with idiopathic pulmonary fibrosis and the average survival following diagnosis is estimated to be between two and five years. The mortality rates range from 58 deaths per million people for women and 64 for men. […] Most individuals that present with idiopathic pulmonary fibrosis are over the age of 60, and it is rare for the condition to be diagnosed before the age of 40. This is likely associated with the pathophysiology of the condition, especially the fact that continuous damage over time appears to be the prime risk factor. […] Most patients that are diagnosed with idiopathic pulmonary fibrosis are over the age of sixty, and anyone over the age of 40 is considered to be at risk of the condition.
  • #7 IPF: Statistics, Facts, and You
    https://www.healthline.com/health/managing-idiopathic-pulmonary-fibrosis/ipf-facts
    IPF is considered a rare, sporadic disease. According to the National Institutes of Health (NIH), about 100,000 people in the United States have IPF. Approximately 30,000 to 40,000 new cases are diagnosed each year. Worldwide, IPF affects 13 to 20 out of every 100,000 people. […] While its hard to pinpoint who exactly gets IPF, one 2016 study reported that slightly more American men are diagnosed with the disease than women. Another predictive factor is age. The NIH has reported that older age is a common diagnosis factor of IPF, with most cases diagnosed in people in their 60s or 70s. […] The most common complication that occurs in IPF is hypoxemia, or a low blood oxygen level. This often requires dependency on supplemental oxygen therapy. Exacerbations, or worsening symptoms, are another of the main complications of living with IPF. An acute exacerbation typically occurs after an infection, heart failure, or pulmonary embolism. However, an acute exacerbation may also occur without any known cause. An exacerbation can present itself as a dry cough or breathlessness. Other more serious complications can also arise, such as the development of blood clots in the lungs, high blood pressure in the heart or lungs, or even lung cancer.
  • #8 Idiopathic pulmonary fibrosis: MedlinePlus GeneticsLock
    https://medlineplus.gov/genetics/condition/idiopathic-pulmonary-fibrosis/
    Idiopathic pulmonary fibrosis has an estimated prevalence of 13 to 20 per 100,000 people worldwide. About 100,000 people are affected in the United States, and 30,000 to 40,000 new cases are diagnosed each year. […] Familial pulmonary fibrosis is less common than the sporadic form of the disease. Only a small percentage of cases of idiopathic pulmonary fibrosis appear to run in families.
  • #9 Global incidence and prevalence of idiopathic pulmonary fibrosis | Respiratory Research | Full Text
    https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-021-01791-z
    Idiopathic pulmonary fibrosis (IPF) is a progressive debilitating lung disease with considerable morbidity. Heterogeneity in epidemiologic studies means the full impact of the disease is unclear. A targeted literature search for population-based, observational studies reporting incidence and/or prevalence of IPF from January 2009 to April 2020 was conducted. Overall, 22 studies covering 12 countries met the inclusion criteria, with 15 reporting incidence and 18 reporting prevalence estimates. The adjusted incidence estimates (per 10,000 of the population) ranged from 0.35 to 1.30 in AsiaPacific countries, 0.09 to 0.49 in Europe, and 0.75 to 0.93 in North America. The adjusted prevalence estimates ranged from 0.57 to 4.51 in AsiaPacific countries, 0.33 to 2.51 in Europe, and 2.40 to 2.98 in North America. South Korea had the highest incidence and prevalence estimates. When prevalence estimates were compared to country-specific rare disease thresholds, IPF met the definition of a rare disease in all countries except South Korea. Due to differences in study methodologies, there is worldwide variability in the reported incidence and prevalence of IPF. Based on the countries included in our analysis, we estimated the adjusted incidence and prevalence of IPF to be in the range of 0.091.30 and 0.334.51 per 10,000 persons, respectively. According to these prevalence estimates, IPF remains a rare disease. Epidemiology estimates of IPF are derived using various data sources. For those using claims databases, it is important to differentiate between specific versus non-specific case definitions of IPF, as estimates can vary drastically depending on the definitions used. The mean age of IPF patients is around 6570 years, with incidence increasing with age. Globally, patient numbers are rising, which may be attributed to, among other causes, an aging population, a higher degree of disease awareness and improved diagnostic tools. Overall, owing to diagnostic challenges, updated diagnostic criteria, and differences in study methodologies there is substantial heterogeneity between studies providing estimated epidemiology data in IPF, impacting the understanding of global disease burden. Reported IPF incidence and prevalence are variable worldwide, even with statistical adjustment made where possible for between-study differences.
  • #10 The epidemiology of idiopathic pulmonary fibrosis and interstitial lung diseases at risk of a progressive-fibrosing phenotype
    https://pmc.ncbi.nlm.nih.gov/articles/PMC9489016/
    IPF can be used as a model when considering other ILDs with a progressive-fibrosing phenotype. […] Risk factors reported to be associated with IPF include cigarette smoking, environmental exposures, microbial pathogens and genetic risk factors. […] Throughout Europe and North America, the estimated incidence of IPF has been reported to range between 2.8 and 19 cases per 100000 people per year. […] The highest rates of IPF in Europe are reported in the UK, with incidence rates between 4.6 and 8.65 per 100000 people per year, and 6000 people diagnosed annually. […] The prevalence of IPF increases with age, with the majority of patients aged 50 years at diagnosis and a higher proportion of males than females. […] However, it is worth noting that a small subset of patients with IPF (0.5-3.7%) may present with familial IPF, in whom the onset of the disease can be earlier.
  • #11 Idiopathic Pulmonary Fibrosis (IPF): Practice Essentials, Background, Pathophysiology
    https://emedicine.medscape.com/article/301226-overview
    No large-scale studies of the incidence or prevalence of idiopathic pulmonary fibrosis (IPF) are available on which to base formal estimates. […] In a retrospective administrative patient claim data study by Raghu et al in 2016, the annual cumulative prevalence of idiopathic pulmonary fibrosis in adults aged 18-64 years in the United States has increased from 13.4 cases per 100,000 persons in 2005 to 18.2 cases per 100,000 persons in 2010. […] A population-based cohort study was completed in Olmsted County, Minnesota, between 1997 and 2005, with the intention of updating and describing the incidence and prevalence of idiopathic pulmonary fibrosis. […] The age-adjusted and sex-adjusted incidence rate of idiopathic pulmonary fibrosis among residents aged 50 years or older ranges from 8.8 cases per 100,000 person-years (narrow-case criteria) to 17.4 cases per 100,000 person-years (broad-case criteria).
  • #12 Clinical manifestations and diagnosis of idiopathic pulmonary fibrosis – UpToDate
    https://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-idiopathic-pulmonary-fibrosis
    Idiopathic pulmonary fibrosis (IPF) is the most common of the spontaneously occurring diffuse parenchymal lung diseases also known as idiopathic interstitial pneumonias (IIPs). […] Reported prevalence and incidence data for IPF depend on ascertainment, reporting methods, and the population evaluated. Both prevalence and incidence increase with advancing age, with presentation commonly occurring in the sixth and seventh decades; IPF is rare in patients less than 50 years of age. […] Overall, the incidence of IPF is increasing worldwide and conservative estimates range from 0.9 to 13 per 100,000 persons, and the prevalence ranges from 3.3 to 45 per 100,000 persons. […] Among a random sample of United States Medicare beneficiaries (largely ≥65 years old), the prevalence of IPF was 494 cases per 100,000, and the incidence was 94 cases per 100,000 persons per year.
  • #13 Idiopathic Pulmonary Fibrosis: Epidemiology, Natural History, Phenotypes
    https://www.mdpi.com/2076-3271/6/4/110
    Definitively, IPF prevalence and incidence trends are on the rise. IPF incidence is universally estimated to be around 10 per 100,000 per year, and is uncommon in those younger than 50 years old and more frequent from the sixth decade on. It is more frequent in males than females, and it can be observed in all races and ethnic origins, although in all likelihood with substantial variability.
  • #14 Idiopathic Pulmonary Fibrosis: Epidemiology, Natural History, Phenotypes
    https://pmc.ncbi.nlm.nih.gov/articles/PMC6313500/
    Mortality from IPF appears to increase steadily worldwide, even considering the abovementioned overarching underestimation. In 2014, between 28,000 and 65,000 deaths in Europe and between 13,000 and 17,000 deaths in the United States were estimated. […] Definitively, IPF prevalence and incidence trends are on the rise. IPF incidence is universally estimated to be around 10 per 100,000 per year, and is uncommon in those younger than 50 years old and more frequent from the sixth decade on. It is more frequent in males than females, and it can be observed in all races and ethnic origins, although in all likelihood with substantial variability.
  • #15 IPF Mortality Rate Appears To Be Increasing, CDC Study Finds
    https://www.managedhealthcareexecutive.com/view/ipf-mortality-rate-appears-to-be-increasing-cdc-study-finds
    CDC researchers report a rate of 7.1 per 100,000, an increase from 5.3 per 100,000 in a previous study. […] Recent analysis by the Centers for Disease Control and Prevention (CDC) suggests that thousands of deaths from idiopathic pulmonary fibrosis (IPF) may be linked to a persons job, with occupational exposures accounting for approximately 21% of IPF-related mortality. […] During the three-year period encompassing 2020, 2021 and 2022, they found records of 67,843 deaths with IPF listed as the underlying (38,869, or 57.3%) or contributing (28,974, 42.7%) cause. IPF accounted for 0.7% of the 9,738,271 deaths. […] The highest number of IPF deaths were among people 75 and older (45,646, or 67.3%), men (39,712, or 58.5%), and White persons (61,356, or 90.4%). […] Estimates of elevated IPF mortality among workers in some industries and occupations warrant confirmation and continued surveillance to identify occupational exposures that could be targeted to prevent or reduce IPF mortality, Mazurek and his colleagues wrote. Continued research to confirm these findings and ongoing monitoring, including detailed work history collection and studies to identify specific occupational risks, are crucial for developing effective strategies and policies to protect workers health.
  • #16 Epidemiology of Idiopathic Pulmonary Fibrosis among U.S. Veterans, 2010-2019.
    https://escholarship.org/uc/item/0514×939
    Using a narrow case definition of IPF, the prevalence increased from 276 cases per 100,000 in 2010 to 725 cases per 100,000 in 2019. […] The annual incidence increased from 73 cases per 100,000 person-years in 2010 to 210 cases per 100,000 person-years in 2019. […] Higher absolute incidence and prevalence rates were noted when a broader case definition of IPF was used. […] Risk factors associated with IPF among Veterans included older age, White race, tobacco use, and rural residence. […] There was significant geographic heterogeneity of disease across the United States. […] This study is the first comprehensive epidemiologic analysis of IPF among the U.S. Veteran population. […] The incidence and prevalence of IPF among Veterans has increased over the past decade. […] The geographic distribution of disease is heterogeneous across the United States with rural residence associated with higher odds of IPF. […] The reasons for these trends deserve further study.
  • #17 Epidemiology of Idiopathic Pulmonary Fibrosis | IntechOpen
    https://www.intechopen.com/chapters/77180
    Age is a substantial independent predictor of IPF. […] Increased mortality in IPF is associated with a consecutive increase in oxygen desaturation episodes during a six-minute walk test. […] Smoking has been included as a potential etiologic agent recently over the last few decades due to its significant prevalence among the IPF patient population. […] Occupational disclosure to surrounding elements contributes around 26% population attributable fraction (PAF) of total cases of IPF. […] The IPF incidence has increased in all studies except for two quality studies, one each from Denmark and USA. […] When all studies are considered, the IPF incidence ranges from 0.22 to 93.7 per 100,000 per year. […] In Europe, the higher rates were observed in the UK, while Scandinavia and Southern Europe revealed lower rates.
  • #18 Idiopathic Pulmonary Fibrosis (IPF): Practice Essentials, Background, Pathophysiology
    https://emedicine.medscape.com/article/301226-overview
    Using data obtained from a large US healthcare claims database, the incidence and prevalence of idiopathic pulmonary fibrosis is higher in men aged 55 years or older, compared with women of the same age. […] Idiopathic pulmonary fibrosis mainly affects persons aged 50 years or older. Approximately two thirds of persons diagnosed with idiopathic pulmonary fibrosis are aged 60 years or older at the time of diagnosis. Using data obtained from a large US healthcare claims database, the incidence of idiopathic pulmonary fibrosis was estimated to range from 0.4-1.2 cases per 100,000 person-years for persons aged 18-34 years. However, the estimated incidence of idiopathic pulmonary fibrosis in persons aged 75 years or older was significantly higher and ranged from 27.1-76.4 cases per 100,000 person-years.
  • #19 Idiopathic Pulmonary Fibrosis: Diagnosis and Epidemiology | Thoracic Key
    https://thoracickey.com/idiopathic-pulmonary-fibrosis-diagnosis-and-epidemiology/
    Johnston and colleagues were the first to calculate IPF (previously termed cryptogenic fibrosing alveolitis in the United Kingdom) mortality in a large-scale epidemiologic study. […] IPF-associated mortality was more common in men (odds ratio [OR] = 2.24; 95% confidence interval [CI] = 2.11-2.38) and increased progressively with age: the risk of IPF in those aged 75 years or more was eight times the risk for those aged 45-54 years. […] The increase in mortality from PF could not be explained by diagnostic transfer (e.g., a change in coding practices from PIPF to IPF, or PIPF to IPF over time), although systematic diagnostic transfer (always coding IPF as PIPF, because of different terminology and coding rules) may have explained the higher mortality of PIPF in the United States. […] Mortality was greater among white non-Hispanics than black non-Hispanics or Hispanics, suggesting that race and ethnicity may also play a role in the susceptibility to IPF.
  • #20
    https://www.mattioli1885journals.com/index.php/sarcoidosis/article/view/3091
    Idiopathic pulmonary fibrosis (IPF) is a non-neoplastic pulmonary disease that is characterised by the formation of scar tissue within the lungs in the absence of any known cause. IPF is the most common of the idiopathic interstitial pneumonias and is an important cause of respiratory mortality. IPF is a relatively rare disease with an estimated prevalence ranging from two to 29 cases per 100,000 and slightly higher in men (20.2/100,000) than in women (13.2/100,000). The mean age at presentation is 66 years. […] Little recent epidemiological data on the prevalence, incidence, risk factors, and mortality related to the disease are available or are limited by methodological weaknesses. Outstanding questions remain, including the causes of IPF, why the incidence is on the rise, and how best to manage this disease. New comparable epidemiological data on IPF are needed.
  • #21 Epidemiology of Idiopathic Pulmonary Fibrosis | IntechOpen
    https://www.intechopen.com/chapters/77180
    Overall, increased incidence rates are observed in the UK, European, South American, and East Asian epidemiological studies. […] The ideal sample should be large to validate the clinical diagnosis by medical records review. […] National IPF registries from different countries will yield valuable data on IPF epidemiology. […] An attempt should be garnered towards using algorithms or other tools in epidemiological studies to establish their efficacy.
  • #22 Latin American Registry of Idiopathic Pulmonary Fibrosis (REFIPI): Clinical Characteristics, Evolution and Treatment | Archivos de Bronconeumología
    https://www.archbronconeumol.org/en-latin-american-registry-idiopathic-pulmonary-articulo-S0300289622003295
    Idiopathic pulmonary fibrosis (IPF) is a progressive, irreversible and frequently fatal disease. Currently there are national and multinational registries in Europe, United States, Australia and China to better understand the magnitude of the problem and the characteristics of the IPF patients. However, there are no national or regional registries in Latin America, so the objective of this study was to carry out a Latin American registry that would allow the identification of IPF patients in our region. […] National registries, each with its own methodology, have now been created in Germany, Sweden, the United Kingdom, Greece, Spain, Australia, India and China. […] In 2014 Ryerson et al. called for the immediate establishment of a global IPF registry. […] The main objective of the REFIPI was to determine the demographic, clinical, functional and radiological characteristics of patients with IPF in Latin America at the time of diagnosis and over the course of their disease, and to record the treatments used, their efficacy and their safety in clinical practice.
  • #23 Epidemiology of idiopathic pulmonary fibrosis: opportunities and hurdles for population-level studies of rare disease | Thorax
    https://thorax.bmj.com/content/79/7/603
    Idiopathic pulmonary fibrosis (IPF) is a rare condition for which reliable disease trends over time can be difficult to obtain. Understanding the epidemiology of IPF is crucial given its impact on quality of life and productivity of affected individuals and their families, as well as substantial costs to the healthcare system. The occurrence of IPF over time has likely changed with growing awareness of the disease, the advent of antifibrotic therapies that slow disease progression and multiple promising clinical trials that may alter the diseases natural history. Knowledge of the incidence and prevalence of IPF informs healthcare needs, which range from access to specialists and pharmacotherapy to availability of hospice and resources for end-of-life care. […] Although smaller studies based on primary sources (eg, medical chart review) exist, many epidemiological studies on IPF have used patient registries. Clinical registries allow for increased accuracy in case identification and more comprehensive data collection, which is particularly helpful in complex conditions like pulmonary fibrosis. Studying epidemiology using clinical registries is limited by the costs required to build and maintain them, evolving diagnostic criteria that may affect case identification, and referral bias given these databases are often located in.
  • #24 Epidemiology of idiopathic pulmonary fibrosis | CLEP
    https://www.dovepress.com/epidemiology-of-idiopathic-pulmonary-fibrosis-peer-reviewed-fulltext-article-CLEP
    Idiopathic pulmonary fibrosis is a chronic fibrotic lung disease of unknown cause that occurs in adults and has a poor prognosis. Its epidemiology has been difficult to study because of its rarity and evolution in diagnostic and coding practices. […] Though uncommon, it is likely underappreciated both in terms of its occurrence (ie, incidence, prevalence) and public health impact (ie, health care costs and resource utilization). Incidence and mortality appear to be on the rise, and prevalence is expected to increase with the aging population. Potential risk factors include occupational and environmental exposures, tobacco smoking, gastroesophageal reflux, and genetic factors. An accurate understanding of its epidemiology is important, especially as novel therapies are emerging.
  • #25 Idiopathic Pulmonary Fibrosis – Epidemiology Forecast to 2029
    https://www.researchandmarkets.com/reports/5147745/idiopathic-pulmonary-fibrosis-epidemiology?srsltid=AfmBOortdLnXOWlworourgMjv1jZBMJYPpPwoHaXWbrmFbCoi_hz9FlZ
    Idiopathic pulmonary fibrosis (IPF) is a type of interstitial lung disease and is a serious chronic condition that affects the tissue surrounding the air sacs, or alveoli, in the lungs. […] IPF is associated with a poor prognosis, with a median survival of three to five years (Raghu et al., 2011). […] The publisher epidemiologists utilized county-specific studies published in peer-reviewed journals to build the forecast. […] The report includes a 10-year epidemiological forecast for the diagnosed incident and prevalent (total and diagnosed) cases of IPF in the 7MM, segmented by age, sex, severity, and comorbidities. […] In the 7MM, the publisher’s epidemiologists forecast an increase in the diagnosed incident cases of IPF from 28,301 cases in 2019 to 32,997 cases in 2019, at an AGR of 1.66% over the forecast period.
  • #26
    https://experts.mcmaster.ca/display/publication182495
    Idiopathic pulmonary fibrosis (IPF) is a rare disease, with estimates of prevalence varying considerably across countries due to paucity in data collection. The aim of this study was to investigate the prevalence and incidence of IPF in Canada using administrative data requiring minimal extrapolation. […] For all ages, the broad prevalence of IPF was 41.8 per 100000 (14259 cases) and was higher for men. The incidence rate was 18.7 per 100000 (6390 cases) and was higher for men. The narrow prevalence was 20.0 per 100000 (6822 cases) and incidence was 9.0 per 100000 (3057 cases). The 4-year risk of death was 41.0% and the quality of life with IPF after 2years was lower than for Global Initiative for Chronic Obstructive Lung Disease stage IV chronic obstructive pulmonary disease. […] Using comprehensive national data, the prevalence of IPF in Canada was higher than other national estimates, suggesting that either IPF may be more common in Canada or that data capture may have been previously limited.
  • #27 Idiopathic Pulmonary Fibrosis – Epidemiology Forecast to 2029
    https://www.globaldata.com/store/report/idiopathic-pulmonary-fibrosis-epidemiology-forecast-to-2029/
    The following data describes epidemiology of IPF. In the 7MM, GlobalData epidemiologists forecast an increase in the diagnosed incident cases of IPF from 28,301 cases in 2019 to 32,997 cases in 2019, at an AGR of 1.66% over the forecast period. The diagnosed prevalent cases of IPF in the 7MM will increase from 130,822 cases in 2019 to 153,747 cases in 2029, at an AGR of 1.75% over the forecast period. The total prevalent cases of IPF in the 7MM will increase from 201,698 cases in 2019 to 237,113 cases in 2029, at an AGR of 1.76% over the forecast period. IPF is more common in men, and the incidence and prevalence of IPF typically increases with advancing age. These trends are reflected in GlobalDatas forecast for the diagnosed incident and prevalent (total and diagnosed) cases for the 7MM.
  • #28 Idiopathic Pulmonary Fibrosis – Epidemiology Forecast to 2029
    https://www.researchandmarkets.com/reports/5147745/idiopathic-pulmonary-fibrosis-epidemiology?srsltid=AfmBOortdLnXOWlworourgMjv1jZBMJYPpPwoHaXWbrmFbCoi_hz9FlZ
    The diagnosed prevalent cases of IPF in the 7MM will increase from 130,822 cases in 2019 to 153,747 cases in 2029, at an AGR of 1.75% over the forecast period. […] The total prevalent cases of IPF in the 7MM will increase from 201,698 cases in 2019 to 237,113 cases in 2029, at an AGR of 1.76% over the forecast period. […] IPF is more common in men, and the incidence and prevalence of IPF typically increases with advancing age. […] These trends are reflected in the publishers forecast for the diagnosed incident and prevalent (total and diagnosed) cases for the 7MM.
  • #29 Overview of Idiopathic Pulmonary Fibrosis (IPF) and Evidence-Based Guidelines
    https://www.ajmc.com/view/overview-of-idiopathic-pulmonary-fibrosis-ipf-and-evidence-based-guidelines-article
    Conversely, an analysis of claims from US adults aged 18 to 64 years showed that the incidence of IPF decreased from 2004 to 2010, with the reduction occurring primarily in younger patients. […] Several risk factors have been linked to the development of IPF, including genetic susceptibility, environmental and occupational exposures, tobacco smoking, comorbidities (particularly gastroesophageal reflux disease [GERD]), and possible association of viral infections. […] The majority of patients with IPF have multiple comorbid conditions, which, rather than fibrotic disease itself, may contribute to the high morbidity and mortality they experience. […] The updated ATS/ERS guideline on IPF treatment published in 2015 made a weak recommendation against treatment of pulmonary hypertension and weak recommendation in favor of GERD treatment. […] Observational studies have demonstrated the ability of a bundled, multidisciplinary approach to improve transplant-free survival among patients with IPF. […] Lung transplantation can improve survival among patients with IPF and should be considered in patients with moderate to severe IPF.
  • #30
    https://www.pulmonaryfibrosis.org/understanding-pff/types-of-pulmonary-fibrosis/idiopathic-pulmonary-fibrosis
    More than 250,000 Americans are living with PF and ILD. Idiopathic pulmonary fibrosis is one of the most common forms of PF. The prevalence of PF and ILD is on the rise with more than 50,000 new cases diagnosed annually. […] Idiopathic pulmonary fibrosis (IPF) is the most common type of idiopathic interstitial lung disease. […] Although the word idiopathic means of unknown cause, we know that there are certain factors that increase the risk of receiving an IPF diagnosis. […] There are also conditions, such as gastroesophageal reflux disease (acid reflux, heartburn, or GERD), sleep apnea, or pulmonary hypertension (PH) that are often present in people who are diagnosed with IPF. […] Idiopathic pulmonary fibrosis is a progressive disease, which means that fibrosis builds up over time, gradually causing an increase in breathlessness and the need for increasing amounts of oxygen. The progression of IPF is variable, with some people experiencing slower but steady decline in lung function and others developing more rapidly worsening disease. […] Patients with IPF may have sudden declines in functioning, known as acute exacerbations. Eventually, lung failure (medically called respiratory failure) can develop, which is a life-threatening condition.
  • #31
    https://www.sciepublish.com/article/pii/397
    Idiopathic pulmonary fibrosis (IPF) is a chronic fibrosing interstitial disease of unknown origin, characterized by radiological and histological features consistent with usual interstitial pneumonia (UIP). The incidence and prevalence of IPF are rising globally, a trend attributed to several potential factors. The disease is particularly more prevalent among older individuals, and advancements in treatment have contributed to increased survival rates for those with IPF, further driving up prevalence statistics. The annual incidence of IPF in the USA is estimated to range from 6.8 to 8.8 cases per 100,000 population. Both incidence and prevalence increase with age. IPF is more common among males and has been on the rise in recent years. The median survival for untreated patients is approximately 2 to 3 years post-diagnosis and 15 to 20% of patients experience acute exacerbations, which are typically severe and can be fatal. Additionally, IPF is more frequently reported in males, particularly those who are middle-aged, typically between 40 and 70 years old. Around two-thirds of IPF patients are over 60 years of age at the time of diagnosis. Approximately one-third of patients with fibrosing interstitial lung disease (ILDs) other than IPF may develop PPF. The overall incidence of idiopathic non-specific interstitial pneumonia (iNSIP), regardless of the progressive-fibrosing phenotype, is lower than that of IPF. Some types of fibrosing ILDs are more likely to progress than others. For instance, PPF may be present in 53% of patients with unclassifiable interstitial lung disease (uILD), 40% of those with systemic sclerosis-associated ILD (SSc-ILD), 32% of patients with rheumatoid arthritis-associated ILD (AR-ILD), and 21% of patients with fibrotic hypersensitivity pneumonitis (HP). However, the burden of PPF and the prevalence of comorbidities are not well understood, as the diagnosis of ILDs and the recognition of PPF are often delayed, typically depending on evidence of progression obtained through regular monitoring.
  • #32 Epidemiology and comorbidities in idiopathic pulmonary fibrosis: a nationwide cohort study | BMC Pulmonary Medicine | Full Text
    https://bmcpulmmed.biomedcentral.com/articles/10.1186/s12890-023-02340-8
    The present study utilised nationwide claims data to investigate the prevalence and incidence of comorbidities, their changes over time and their clinical impact on patients with IPF in South Korea. […] The prevalence and incidence rates of IPF since 2011 were more than twice as high in men as in women. […] The prevalence of comorbidities was evaluated at three different time points, at the time of diagnosis of IPF and 1 and 3 years later. […] The prevalence and incidence of IPF differ by race, nationality and ethnicity, although some of these differences may depend on the definition of IPF. […] This study found that both the prevalence and incidence of IPF in South Korea increased annually over time. […] The prevalence of several comorbidities increased more than twofold, except for ischaemic heart disease and congestive heart failure. […] A CCI4 was associated with increased rates of hospitalisations and increased total medical costs, suggesting that comorbidities might affect the clinical course of IPF.
  • #33 The epidemiology of idiopathic pulmonary fibrosis and interstitial lung diseases at risk of a progressive-fibrosing phenotype
    https://pmc.ncbi.nlm.nih.gov/articles/PMC9489016/
    Despite the global distribution of ILDs with a progressive-fibrosing phenotype, their incidence and prevalence are not well defined. […] This may be related to a number of reasons, potentially to the heterogeneous nature of the aetiology, the complexity of diagnosis (and subsequent recording of cases), the low numbers of patients diagnosed and the methods employed to retrospectively analyse patient databases. […] ILDs that may present a progressive-fibrosing phenotype appear to be more common in older adults and are associated with a complex network of environmental and genetic factors. […] Given the negative associated prognosis, further epidemiological studies are warranted to help identify ILD patients who may develop a progressive-fibrosing phenotype and enable effective clinical management.
  • #34 Latin American Registry of Idiopathic Pulmonary Fibrosis (REFIPI): Clinical Characteristics, Evolution and Treatment | Archivos de Bronconeumología
    https://www.archbronconeumol.org/en-latin-american-registry-idiopathic-pulmonary-articulo-S0300289622003295
    REFIPI is the first Latin American IPF registry, and so far one of the largest multinational registries in terms of participating countries and number of patients. […] The REFIPI supplements the results reported in other studies and randomized clinical trials and, like other registries, includes a higher proportion of elderly male patients. […] The REFIPI has both strengths and weaknesses. On the one hand, it is the first multinational, unsponsored, Latin American IPF registry, and has the backing of a recognized scientific society (ALAT). […] The results of the REFIPI have given us the chance to identify and correct some major problems in the management of patients with IPF in Latin America: misdiagnosis of IPF (11.4% of cases were excluded for this reason), delay in diagnosis (12 months), and poor access to lung transplantation (only 1.4% of patients were transplanted).