INternational Study Group of Pediatric Pancreatitis: In Search for a CuRE Cohort Study

Uç, Aliye; Perito, Emily R.; Pohl, John F.; Shah, Uzma; Abu‐El‐Haija, Maisam; Barth, Bradley; Bellin, Melena D.; Ellery, Kate; Fishman, Douglas S.; Gariepy, Cheryl E.; Giefer, Matthew J.; Gonska, Tanja; Heyman, Melvin B.; Himes, Ryan; Husain, Sohail Z.; Maqbool, Asim; Mascarenhas, Maria R.; McFerron, Brian A.; Morinville, Véronique D.; Lin, Tom K.; Liu, Quin Y.; Nathan, Jaimie D.; Rhee, Sue; Ooi, Chee Y.; Sellers, Zachary M.; Schwarzenberg, Sarah Jane; Serrano, José; Troendle, David M.; Werlin, Steven L.; Wilschanski, Michael; Zheng, Yongri; Yuan, Ying; Lowe, Mark E.

doi:10.1097/mpa.0000000000001172

Cited by 40 publications

(31 citation statements)

References 41 publications

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“…Compared to the previous report from INSPPIRE (32), the frequency of EPI and diabetes was slightly higher in this cohort, probably because of improved characterization of these parameters in INSPPIRE-2 (35). The diagnosis of EPI continues to be challenging.…”

Section: Discussioncontrasting

confidence: 86%

Analysis of INSPPIRE‐2 Cohort

Uç¹,

Cress²,

Wang³

et al. 2022

J. pediatr. gastroenterol. nutr.

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Objectives: The objective of this study is to investigate risk factors and disease burden in pediatric acute recurrent pancreatitis (ARP) and chronic pancreatitis (CP). Methods: Data were obtained from INternational Study group of Pediatric Pancreatitis: In search for a cuRE-2 (INSPPIRE-2), the largest multi-center prospective cohort study in pediatric patients with ARP or CP. Results: Of 689 children, 365 had ARP (53%), 324 had CP (47%). CP was more commonly associated with female sex, younger age at first acute pancreatitis (AP) attack, Asian race, family history of CP, lower BMI%, genetic and obstructive factors, PRSS1 mutations and pancreas divisum. CFTR mutations, toxic-metabolic factors, medication use, hypertriglyceridemia, Crohn disease were more common in children with ARP. Constant or frequent abdominal pain, emergency room (ER) visits, hospitalizations, medical, endoscopic or surgical therapies were significantly more common in CP, episodic pain in ARP. A total of 33.1% of children with CP had exocrine pancreatic insufficiency (EPI), 8.7% had diabetes mellitus. Compared to boys, girls were more likely to report pain impacting socialization and school, medical therapies, cholecystectomy, but no increased opioid use. There was no difference in race, ethnicity, age at first AP episode, age at CP diagnosis, duration of disease, risk factors, prevalence of EPI or diabetes between boys and girls. Multivariate analysis revealed that family history of CP, constant pain, obstructive risk factors were predictors of CP. Conclusions: Children with family history of CP, constant pain, or obstructive risk factors should raise suspicion for CP.

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Section: Discussioncontrasting

confidence: 86%

Analysis of INSPPIRE‐2 Cohort

Uç¹,

Cress²,

Wang³

et al. 2022

J. pediatr. gastroenterol. nutr.

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“…The INSPPIRE-2 study includes 22 tertiary centers from 4 countries with a current enrollment of 640 children and adolescents with ARP or CP. Information regarding INSPPIRE-2 were detailed in a previous publication (19). All centers have Institutional Review Board approval for collecting data and met criteria of the Declaration of Helsinki.…”

Section: Methodsmentioning

confidence: 99%

Health‐Related Quality of Life in Pediatric Acute Recurrent or Chronic Pancreatitis

Tham

Wang

Gariepy

et al. 2022

J. pediatr. gastroenterol. nutr.

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Objectives:Abdominal pain, emergency department visits, and hospitalizations impact lives of children with acute recurrent pancreatitis (ARP) and chronic pancreatitis (CP). Data on health-related quality of life (HRQOL) in this population, however, remains limited. We aimed to evaluate HRQOL in children with ARP or CP; and test biopsychosocial risk factors associated with low HRQOL.Methods:Data were acquired from the INternational Study Group of Pediatric Pancreatitis: In search for a cuRE registry. Baseline demographic and clinical questionnaires, the Child Health Questionnaire (measures HRQOL) and Child Behavior Checklist (measures emotional and behavioral functioning) were completed at enrollment.Results:The sample included 368 children (54.3% girls, mean age = 12.7years, standard deviation [SD] = 3.3); 65.2% had ARP and 34.8% with CP. Low physical HRQOL (M = 38.5, SD = 16.0) was demonstrated while psychosocial HRQOL (M = 49.5, SD = 10.2) was in the normative range. Multivariate regression analysis revealed that clinical levels of emotional and behavioral problems (B = –10.28, P < 0.001), episodic and constant abdominal pain (B = 04.66, P = 0.03; B = –13.25, P < 0.001) were associated with low physical HRQOL, after accounting for ARP/CP status, age, sex, exocrine, and endocrine disease (F [9, 271] = 8.34, P < 0.001). Borderline and clinical levels of emotional and behavioral problems (B = –10.18, P < 0.001; B = –15.98, P < 0.001), and constant pain (B = –4.46, P < 0.001) were associated with low psychosocial HRQOL (F [9, 271] = 17.18, P < 0.001).Conclusions:Findings highlight the importance of assessing HRQOL and treating pain and psychosocial problems in this vulnerable group of children.

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“…Consortia dedicated to clinical and translational research in RAP and CP have been developed worldwide, and it is hopeful that progress will be accelerated over the next decade. [37][38][39][40][41]…”

Section: Opportunities For Investigators For Conducting Clinical Tria...mentioning

confidence: 99%

Clinical Trials in Pancreatitis: Opportunities and Challenges in the Design and Conduct of Patient-Focused Clinical Trials in Recurrent Acute and Chronic Pancreatitis

et al. 2022

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Recurrent acute pancreatitis and chronic pancreatitis represent high morbidity diseases, which are frequently associated with chronic abdominal pain, pancreatic insufficiencies, and reduced quality of life. Currently, there are no therapies to reverse or delay disease progression, and clinical trials are needed to investigate potential interventions that would address this important gap. This conference report provides details regarding information shared during a National Institute of Diabetes and Digestive and Kidney Diseases-sponsored workshop on Clinical Trials in Pan-creatitis that sought to clearly delineate the current gaps and opportunities related to the design and conduct of patient-focused trials in recurrent acute pancreatitis and chronic pancreatitis. Key stakeholders including representatives from patient advocacy organizations, physician investigators (including clinical trialists), the US Food and Drug Administration, and the National Institutes of Health convened to discuss challenges and opportunities with particular emphasis on lessons learned from trials in participants with other painful conditions, as well as the value of incorporating the patient perspective throughout all stages of trials.

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INternational Study Group of Pediatric Pancreatitis: In Search for a CuRE Cohort Study

Cited by 40 publications

References 41 publications

Analysis of INSPPIRE‐2 Cohort

Analysis of INSPPIRE‐2 Cohort

Health‐Related Quality of Life in Pediatric Acute Recurrent or Chronic Pancreatitis

Clinical Trials in Pancreatitis: Opportunities and Challenges in the Design and Conduct of Patient-Focused Clinical Trials in Recurrent Acute and Chronic Pancreatitis

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