Research Ideas  

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Welcome to IBD Partners Research Ideas Page!

In this area you will be able to:

  • Propose, vote on, and discuss research ideas
  • View current studies
  • View published research

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You are an active participant in  IBD Partners research prioritization process! Have you ever had a question about IBD that you wish science could answer? Tell us what research is important to you!

Here, you can submit a research idea to the community, cast your votes, and discuss research ideas proposed by other members. Please make your research question as specific as possible. Other members will vote on your research idea, and we will prioritize research ideas with the most votes.

You are allowed to vote for your own proposed research idea if you want. However, you can only vote for a total of five research ideas. If you have already cast your five votes and an idea you like even more is proposed, you can change your votes at any time to reflect your current preferences.

The research team will review all submitted ideas and provide a response to you and to the community. If your idea leads to an IBD Partners Study, you will have the opportunity to serve as a patient collaborator on the research team for that study.

We encourage you to prioritize the ideas that are most important to you, even if the research team determines that your idea is not a good fit for IBD Partners. We will share ideas labeled “Not a Good Fit” with researchers outside of our network when appropriate. We want to make sure all of your votes count!

Thanks for your participation in this important platform to help the IBD research community understand what research questions are important to patients. We are passionate about finding answers to your questions!

Published Studies

Year Publication Categories
2018
Social Media Use and Preferences in Patients With Inflammatory Bowel Disease

Summary

There has been growing interest in the use of social media for managing chronic illnesses. Few studies have examined how patients with Inflammatory Bowel Disease utilizes social media as a tool for managing their health. In this study we surveyed patients in Crohn’s and Colitis Foundation partner’s database to get a better understandings of patient’s preferences for social media usage. We found that 32% of IBD patients utilized social media for disease management. We also found that the majority of patients were unsure of the quality of IBD related information posted on social media and most agree d that the quality could be improved if the Crohn’s and Colitis Foundation contributed to posts. The leading concerns surrounding social media use were privacy/confidentially and lack of trust of information posted. In summary, IBD patients expressed interest in utilizing social media to aid in the management of their disease, though lack of knowledge about quality exists as do concerns about the privacy/confidentially of posts.


Full Scientific Manuscript

Keywords
social media; digital health

Lifestyle
2018
Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network

Summary

Successful patient-powered research networks (PPRNs) can improve health behaviors and outcomes. Researchers for this study wanted to better understand how a PPRN might meet the needs of people with inflammatory bowel disease (IBD). To do this, they sought feedback from members of the IBD community through focus groups and phone interviews. Focus group discussions were designed to understand participants’ experiences and needs managing their disease. Discussions also explored the outcomes most important to participants and ways to make a PPRN most useful. Individual interviews were used to assess different design prototypes of the patient portal user interface and explore ways the portal could help track and manage IBD while simultaneously contributing to research. The research found that participants were more willing to participate in the PPRN if the knowledge gained from research studies would benefit both society and the individual. However, participants were concerned about the credibility of online resources, pharmaceutical industry profiting from their data, data security, and the time it would take to participate in a PPRN. Participants expressed that they wanted a true and equal partnership in every phase of building a PPRN. They also felt it was important to have access to personal health records and be able to track health status and symptoms. This feedback was incorporated into the design of the IBD Partners PPRN.


Full Scientific Manuscript

Keywords
PPRN; Disease management; Online resources

Lifestyle, Health Maintenance, Research Methods
2018
Paternal Disease Activity Is Associated With Difficulty in Conception Among Men With Inflammatory Bowel Diseases

Summary

IBD commonly affects men and women during their reproductive ages. Because of this, researchers are interested in knowing how the disease affects fertility and pregnancy. Much research on the impact of IBD on fertility and pregnancy has focused on women, but for this study, researchers focused on men. They wanted to know how men’s IBD and their use of IBD medication affect reproductive outcomes. The study results showed that men who received a diagnosis of IBD before trying to conceive were more likely to have difficulty conceiving than men who developed IBD after conceiving. However, these fi ndings were noted only in those with recently active disease within the past 6 months. Men with IBD who were in long-term remission were similar to the rates prior to development of IBD. Exposure to any of the medications for treating IBD was not associated with congenital anomalies, low birth weight or preterm births.


Full Scientific Manuscript

Keywords
paternal; disease activity; men; fertility; pregnancy

Lifestyle, Health Maintenance
2018
Body Image Dissatisfaction in Pediatric Patients with Inflammatory Bowel Diseases

Summary

Children and teenagers with Inflammatory Bowel Disease (IBD) are at increased risk of being unhappy with their body image. This study aimed to learn more about how common body image dissatisfaction (or “BID”) is among these children and teenagers and to see if we could point to any risk factors for having BID. A total of 664 participants in the IBD Partners Kids & Teens study, ages 9-18, completed an online survey about anxiety, depression, disease activity, and quality of life. We found that about 3% of participants met the criteria for having BID by selecting the answer choices “I look awful” or “I look bad” when asked about their appearance. Young patients with BID tended to have worse disease, to be taking steroids, to be female, and to be diagnosed at an older age. These participants were also much more anxious and depressed than those who were satisfied with their appearance. Pediatric patients with BID should discuss these concerns with their physicians and healthcare teams.


Full Scientific Abstract

Keywords
body image; body image dissatisfaction; BID, anxiety; depression; mood disorder; psychosocial; pediatric; children; kids; K&T; kids & teens; IBD Partners Kids & Teens

Lifestyle, Health Maintenance, Mental Health
2017
Symptom Clusters in Adults with Inflammatory Bowel Disease

Summary

Symptoms (pain, fatigue, sleep disturbance, depression, and anxiety) are common among people with Inflammatory Bowel Disease (IBD). We know people do not experience only one symptom and symptoms may occur is clusters. Symptom clusters are two or more symptoms that occur together and are related. Understanding how symptoms cluster is needed so that we can develop methods that decrease multiple symptoms in IBD. The purpose of this study was to (a) describe how symptoms cluster in IBD, and (b) to describe the relationship between demographic and clinical factors and symptom cluster membership.
In this study, we used the CCFA Partners Cohort and the symptoms of pain interference, fatigue, sleep disturbance, anxiety, and depression. There were 5,296 participants with an average age of 44 years, and the sample was 72% female. We discovered four symptom cluster groups. The first group was labeled “low symptom burden” (26%), and this group had symptoms of pain, fatigue, sleep disturbance, depression, and anxiety. The second, and largest group (38%) was labeled “high symptom burden,” and included pain, fatigue, sleep disturbance, depression, and anxiety. The third group included 22.09% of participants, was labeled “physical symptoms,” and had the symptoms of pain, fatigue, and sleep disturbance. The fourth group “psychological symptoms,” was the smallest group at 14.22%, and included the symptoms of anxiety and depression. Being female, having a history of smoking, currently taking corticosteroids, Crohn’s disease, and active disease state were associated with belonging to the high symptom burden group compared to the low symptom burden group. Additional research is needed to test strategies that may be effective at reducing symptoms in people with IBD.


Full Scientific Manuscript

Keywords
symptom clusters; pain; fatigue; sleep disturbance; depression; anxiety; low symptom cluster; high symptom cluster; Crohn’s disease; CD; ulcerative colitis; UC

Study Updates, Medications, Treatment
2017
Patients in Remission are more Likely to Demonstrate High Patient Activation in a Large Internet-Based Cohort of Patients with Inflammatory Bowel Disease

Summary

There has been a recent expansion of both medical and surgical options for the treatment of ulcerative colitis (UC) and Crohn’s disease (CD). With these new options comes an increased recognition of the patient’s critical role in the decision making process. The concept of patient activation has also continued to develop in recent years. Patient activation is defined as a patient’s willingness to manage his or her own health care. High levels of patient activation are achieved when patients understand their role in treatment decisions and have the knowledge and skills to manage their care. We used the Patient Activation Measure (PAM, ® Insignia Health) to assess levels of patient activation among about 1,500 participants in CCFA Partners. We found that participants who completed college had higher levels of patient activation. Participants with a history of inflammatory bowel disease-related surgery also had higher levels of patient activation. Additionally, patients with higher activation were more likely to be in clinical remission in both CD and UC. This finding suggests that patient activation may be an important driver of outcomes among patients with CD and UC.


Full Scientific Abstract

Keywords
patient activation; PAM; Patient Activation Measure; surgery; Crohn’s disease; CD; ulcerative colitis; UC; remission

Study Updates
2016
Evaluation of Gastrointestinal Patient Reported Outcomes Measurement Information System (GI-PROMIS) Symptom Scales in Subjects with Inflammatory Bowel Diseases

Summary

Patient reported outcomes (PROs) are important measures of how well treatments work in inflammatory bowel disease (IBD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a scale for measuring PROs for physical, mental, and social health. A gastrointestinal (GI) PROMIS scale was recently developed based on responses from people across the United States. The GI PROMIS scale includes questions about eight common GI symptoms: gas, reflux, diarrhea, soilage, constipation, belly pain, nausea and vomiting, and difficulty swallowing. We studied these questions in 2,378 people with Crohn’s disease (CD) and 1,455 people with ulcerative colitis (UC) in CCFA Partners. About half of the participants reported being in remission. Compared to participants in remission, those with active CD reported worse symptoms on the GI-PROMIS scale for all symptoms. The same was true for participants with active UC with the exception of difficulty swallowing. Participants with worse quality of life reported worse symptoms on the GI-PROMIS scale for all symptoms. Participants with more diarrhea, belly pain, and gas reported poorer mental and social PROs. In summary, participants who reported worse GI-PROMIS symptoms also reported worse qualify of life, disease activity, and mental and social outcomes. These results suggest that the GI-PROMIS scales could be an important way to measure symptoms in the future.


Full Scientific Abstract

Keywords
patient reported outcomes; IBD; quality of life; GI-PROMIS; psychosocial symptoms

Research Methods
2016
Infertility Care Among Men and Women With Inflammatory Bowel Diseases in the CCFA Partners Cohort

Summary

We studied how often women and men with inflammatory bowel disease (IBD) seek care for infertility (problems getting pregnant). We also looked at reasons why individuals had trouble getting pregnant. A total of 12.5% of women in CCFA Partners went to see a doctor for problems getting pregnant. This was a little higher in women with Crohn’s disease (14.1%) than in women with ulcerative colitis (9.5%). Risk factors for needing help getting pregnant were: prior GI surgery and older age. The most common cause of fertility problems in women was blocked fallopian tubes. For men, 8.7% needed help with fertility. Age was a risk factor. The most common cause of fertility problems was a problem with their female partner. Nearly 80% of women and men who went to the doctor for fertility problems were able to get pregnant. These rates of pregnancy with fertility treatment are similar to those of people without IBD.


Full Scientific Abstract

Keywords
infertility; pregnancy; sexual health; infertile; sexual function

Health Maintenance
2016
Achieving Synergy: Linking an Internet-Based Inflammatory Bowel Disease Cohort to a Community-Based Inception Cohort and Multicentered Cohort in Inflammatory Bowel Disease

Summary

Cohort studies follow groups of people to understand disease. They are difficult to organize and often do not focus on patient-reported outcomes. Internet-based cohort studies provide new opportunities to study patient-reported outcomes; they are also efficient and can easily include large numbers of people. Linking an Internet-based cohort study, like CCFA-Partners, to a traditional cohort study can be beneficial to both studies and add a tremendous amount of information about a disease. Therefore, we aimed to link CCFA-Partners with the Ocean State Crohn's and Colitis Area Registry (OSCCAR) and The Sinai-Helmsley Alliance for Research Excellence (SHARE), both of which are traditional cohort studies. OSCCAR is a cohort of patients with inflammatory bowel disease (IBD) in Rhode Island. SHARE is a cohort across 7 academic medical centers around the United States. Both cohorts collect specimens, like blood and stool, from participants. OSCCAR enrolled people with IBD from 2008 to 2013. SHARE started enrolling people with IBD in July 2012 and enrollment is continuing. People in the cohorts who had access to the Internet were told about CCFA-Partners by the study coordinators and encouraged to enroll.

In the OSCCAR cohort, 243 of the 320 participants consented to join the CCFA-Partners cohort. However, only 44 participants completed enrollment in CCFA-Partners. OSCCAR participants who completed enrollment were better educated than those who did not complete enrollment. In the SHARE cohort, 436 participants completed enrolment in CCFA-Partners. SHARE participants who completed enrollment were more often women and white. If they had Crohn’s disease, those who completed enrollment had fewer disease symptoms and if they had ulcerative colitis, those who completed enrollment had less extensive disease. Linkage of CCFA Partners with cohorts such as OSCCAR and SHARE may be a cost-effective way to expand opportunities for research. Although linkage is possible, participant’s willingness to complete the linkage is the limiting factor. Asking participants in a traditional cohort at the time of enrollment may be a way of maximizing linkage to CCFA-Partners.


Full Published Manuscript

Keywords
cohort; Crohn's Disease; Crohn's; CD; population; patient-reported outcomes; symptoms; physical health; social health; psychosocial health

Research Methods, Study Updates, Health Maintenance
2016
Menopause and Hormone Replacement Therapy in Women with Inflammatory Bowel Diseases in CCFA Partners

Summary

Women with inflammatory bowel disease, or IBD, frequently experience changes in abdominal symptoms (e.g. bowel frequency and pain) in relation to the different stages of the menstrual cycle. This may be related to the hormonal changes during the various stages of the cycle. Menopause is the state when the menstrual cycles and associated hormonal fluctuations stop permanently. This can occur naturally in relation to age or can be secondary to surgery or medical therapy that impact the reproductive organs. The impact of menopause on disease activity of patients with IBD is unknown. We assessed the disease characteristics of menopausal women within the CCFA Partners network. We also evaluated the impact of menopause and hormone replacement therapy, or HRT, on disease activity. A total of 2252 women were included in this study. Of these, 799 indicated that they had gone through menopause. The majority of post-menopausal women reported natural menopause with an average age of 50 in both Crohn's disease and ulcerative colitis patients. About half the post-menopausal women indicated a current or prior use of HRT. The post-menopausal state was associated with increased disease activity in both Crohn's disease and ulcerative colitis patients. This association was more prominent for women at age = 45 compared to those older than 45 years. Interestingly, the use of HRT did not impact disease activity at any age. Those findings suggest that the cessation of hormonal fluctuation in post-menopausal women as well as the age play role in predicting disease activity in women with IBD.


Full Scientific Abstract

Keywords
female; feminine; women’s health; women; menopause; hormone; hormonal influence; hormonal fluctuation; Hormone Replacement Therapy; HRT

Lifestyle, Mental Health
2016
Association Between Affective-Cognitive Symptoms of Depression and Exacerbation of Crohn's Disease

Summary

Depression is common among patients with Crohn’s disease (CD). In this study, we wanted to understand if CD patients in remission who reported symptoms of depression were more likely to experience worsened CD symptoms later in time. To answer this question we looked at responses to CCFA Partners survey questions submitted by more than 2,000 CD patients about negative mood (I felt depressed), negative beliefs about the self (I felt worthless, I felt hopeless), and decreased life engagement/negativity (I felt hopeless) during the past seven days. Twelve months later, we asked about the severity of their CD activity using a standard CD questionnaire about diarrhea, pain, and well-being. We found that symptoms of depression predicted CD activity a year later. In other words, CD patients who were depressed were more likely to have CD symptoms a year later than those who were not depressed.


Full Published Manuscript

Keywords
depression; comorbidity; Crohn’s disease; Crohn’s; CD

Lifestyle, Mental Health
2015
Medication Utilization and the Impact of Continued Corticosteroid Use on Patient-Reported Outcomes in Elderly Patients with Inflammatory Bowel Disease

Summary

Older patients with inflammatory bowel disease, or IBD, often have higher rates of hospital stays and disease complications. Past studies have shown that medical treatment plans for older IBD patients may be different than those for younger patients. One difference is that treatment plans for older IBD patients involve increased use of 5-aminosalicylates (5-ASA) and corticosteroids. It is not known how continuous use of steroids by older patients affects anxiety, depression, sleep, and fatigue. Using data from CCFA Partners surveys we wanted to 1) describe medication use in older versus younger IBD patients and 2) determine whether continuous use of steroids by older patients leads to differences in anxiety, depression, sleep, and fatigue. We found that medication use is different among older patients. Older patients with Crohn's disease have more continued steroid use than younger patients. Continued steroid use was associated with worsened anxiety, sleep, and fatigue. Also, steroid use alone in older Crohn's disease patients was associated with increased depression and anxiety. As in younger IBD patients, our findings support limiting the continuous use of steroids for treatment of IBD in older populations.


Full Scientific Manuscript

Keywords
geriatric; elderly; age; steroid; corticosteroid; drugs

Medications, Lifestyle
2014
Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking in the CCFA Partners Cohort

Summary

A biobank is a collection of samples from patients (including spit, stool or blood). Biobanks are very important for understanding risk factors for developing disease or for severity of disease. We wanted to understand more about why patients with inflammatory bowel disease (IBD) would or would not participate in a biobank. We first did a series of interviews over the phone with patients who were participating in the CCFA Partners study. This helped us to understand the important concerns about biobanks and develop a survey for use in CCFA Partners. We then sent a survey to over 800 people with IBD in CCFA Partners. We did a total of 26 phone interviews. Patients doing the interviews told us that they had concerns about how samples would be collected/stored; who would be allowed access; whether these samples would be used for other things (not only research); and whether this would affect whether they could get life insurance. Most people were not that worried about using the blood for genetic studies. People thought that that biobanks were important for research, that they might lead to a cure; that by donating they would be helping others or family members with IBD; and hoped that they might personally benefit, although most understood that they likely would not. These themes aided in the development of a survey instrument to assess perceptions of biobanking. A total of 476 people initially finished the survey. Almost 40% said that they would 'definitely yes' donate samples, 56.0% would 'probably yes' donate, 5.1% 'probably no' and 0.7% 'definitely no'. There were no factors that made someone more likely to donate (reported donation rates were not different for Crohn's disease (CD) versus ulcerative colitis (UC), remission versus active disease, or education level. People were most willing to donate spit, followed by blood and lastly stool. Knowing these important thoughts on sample donation/biobanks will help researchers to develop consents for IBD biobanks and design educational materials on biobanks for IBD A biobank is a collection of biological samples, such as saliva, blood, and stool, from individuals with a common condition such as inflammatory bowel disease (IBD). Biobanks are important for understanding risk factors for developing disease or for severity of disease. We wanted to learn more about IBD patients’ understanding of and willingness to participate in a biobank. We first did 26 phone interviews with patient volunteers participating in the CCFA Partners study. Those interviews helped us better understand concerns related to biobanks. Patients doing the interviews told us that they had concerns about how samples would be collected/stored, who would be allowed access, whether these samples would be used for anything other than research, and whether participation in a biobank would affect life insurance eligibility. Most patients were not that worried about using blood for genetic studies. Participants thought biobanks were important for research, that they might lead to a cure, that by donating they would be helping others or family members with IBD, and hoped that they might personally benefit. These results from the phone interviews were used to develop an online survey instrument to assess perceptions of biobanking. In a larger sample, a total of 1,007 people with IBD completed the online survey. Almost 40% said they would ‘definitely’ donate samples, 56.4% would ‘probably’ donate, 3.6% ‘probably not’, and 0.6% ‘definitely not’. There were no differences in willingness to donate specimens based on disease type (Crohn’s vs. ulcerative colitis) or on disease activity (in remission vs. currently active disease). People were most willing to donate saliva specimens, followed by blood and lastly stool samples. Knowing these important attitudes and beliefs about sample donations and biobanks will help researchers develop consents and educational materials related to biobanks that will encourage wider involvement.


Full Published Manuscript

Keywords
biobanking; sample collection; sample storage, confidentiality; HIPAA; community; population

Research Methods, Study Updates
2014
Prevalence of a Gluten-free Diet and Improvement of Clinical Symptoms in Patients with Inflammatory Bowel Diseases

Summary

Patients with celiac disease (an autoimmune disorder where eating gluten can damage the small intestine) benefit from a gluten free diet (GFD). Few data are available to tell us if patients with inflammatory bowel diseases (IBD) may also benefit from this diet. Individuals with GI symptoms such as bloating, abdominal pain, diarrhea, fatigue and nausea can have non-celiac gluten sensitivity, for which a GFD can be beneficial. Non-celiac gluten sensitivity can also co-exist with IBD. We therefore asked patients enrolled in CCFA Partners whether they have ever tried a gluten free diet (GFD), whether they followed this diet closely, and whether it helped with any symptoms. A total of 1647 people took the survey on GFD. A total of 314 (19.1%) reported that they had ever tried a GFD and 135 (8.1%) were currently following the diet. Overall, 206/314 (65.6%) trying a GFD reported improvement in any GI symptom while on this diet. Over a 1/3 of people (38.3%) felt that they experienced fewer or less severe flares while on the diet. Improvements in clinical symptoms were reported for bloating (56.5%), diarrhea (42.6%), abdominal pain (41.5%), fatigue (27.5%), and nausea (26.3%) while on a GFD. Fatigue was significantly improved with excellent adherence to the diet. Because many patients had improved symptoms on the GFD, it is possible that patients with IBD could suffer from non-celiac gluten sensitivity. Fewer people who felt better on a GFD were taking biologics medications, suggesting that flare symptoms in those with more severe disease may not respond to a GFD. Future studies are needed to understand the benefits of this diet in IBD patients, and the mechanism of improvement with this dietary intervention.


Full Published Manuscript

Keywords
Gluten Free Diet; GFD; flare; active disease; risk; prevention

Diet, Lifestyle, Alternative Therapies, Health Maintenance
2013
Behavioral Strategies to Improve Cohort Retention within CCFA Partners

Summary

Earlier studies have shown that people who participate in surveys (such as CCFA Partners) may respond better to survey requests if these have a time limit (such as telling participants that surveys need to be done in 72 hours). This is called "scarcity." Other ways to improve survey response include messages targeting: paying it forward (that what you are doing will help people in the future), guilt, altruism (helping others), and self-serving (helping yourself). Our goal was to see if scarcity or these messages improved response rates within CCFA Partners. The scarcity group received a 'warning' email informing them that they will be sent a survey link the next day, and that they will have 72 hours to complete the survey. The control group received no warning email. We also tested the four different messages described above and a "control" message that just informed patients that it was time for their survey. We sent emails to a total of 8697 people within CCFA Partners asking them to complete their follow-up surveys. Of these, 2965 started their follow up survey. There was no difference between those in the 'scarcity group' as compared to control group. Scarcity was, however, more effective in the >50 age group. Of the messages, guilt resulted in a significantly higher response rate, while the other messages were no different than control. In summary, behavioral interventions applied to an internet-based IBD cohort have little benefit in improving response rates. Guilt had the strongest effect. The reasons that the other messages did not work may be that these interventions don't apply in an IBD population, that e-mail messages are not as effective, or that members of CCFA Partners are already very motivated to fill out surveys.


Full Scientific Abstract

Keywords
cohort; response; retention; community; population; behavioral strategies; behavior

Research Methods, Study Updates
2013
Risk Factors for Depression in the Elderly Inflammatory Bowel Disease Population

Summary

Depression is common among patients with inflammatory bowel disease, or IBD. This study showed that as many as 1 in 4 elderly patients with IBD may suffer from depression. Depressed elderly patients with IBD were more likely to have more severe disease activity. They were also less likely to take their medication correctly all of the time.


Full Published Manuscript

Keywords
depression; screening; detection; prevention; comorbidity; geriatric; elderly; age; population; community; medication; adherence; compliance

Mental Health
2013
Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD

Summary

After the successful launch of CCFA Partners for adult patients with inflammatory bowel disease, the kids and teens component (CCFA Partners Kids & Teens) started in 2013. In partnership with the Crohn's and Colitis Foundation of America (CCFA), children <18 years of age were asked to join the internet-based study through email invitations and promotion on social media sites. After informed consent, the children and their parents completed surveys asking questions about their disease, their medications and other patient reported outcomes (such as quality of life, fatigue, sleep, peer relations, mood, etc). In the first month, 419 children joined. The average age was 13, with about 1/2 being female and about 3/4 having Crohn's disease (CD). Common medications used by patients with CD were biologics, thiopurines (6mp or azathioprine) or mesalamine-based medications (Pentasa, Lialda, Apriso, etc). The most common medication for patients with ulcerative colitis (UC) was mesalamine-based medications. Most of the CD patients were in remission and most UC patients had mild disease. Children who had active disease had more depression and anxiety. Following this group of children over time will help us to learn a great deal about living with IBD as a child, and will allow us to follow these children into adulthood to learn even more about the disease itself, the impact of medications, and how symptoms change over time.


Full Scientific Abstract

Keywords
kids & teens; K&T; pediatric; age; kids; teens; community; population; resource

Research Methods, Study Updates
2013
Symptom Worsening During Pregnancy and Lactation is Associated with Age, Body Mass Index, and Disease Phenotype in Women with Inflammatory Bowel Disease

Summary

In a study of over 300 women with inflammatory bowel disease who reported at least one pregnancy after their IBD diagnosis, more than half reported that their disease symptoms improved during pregnancy, while about 20% said that their disease symptoms were worse during pregnancy. Younger women and women with ulcerative colitis were more likely to have increased disease symptoms during pregnancy. Of the nearly 200 women who breastfed, 14% said that symptoms improved, 13% said symptoms got worse and about 40% said their symptoms did not change during breastfeeding Those with worsening symptoms during breastfeeding were younger and had a lower body mass index than those whose symptoms remained the same or improved.


Full Scientific Abstract

Keywords
community; population; pregnancy; hormone; hormonal; hormone influence; hormone fluctuation; lactation; age; BMI Disease phenotype; BMI; phenotype; flare; active disease; risk; women; women’s health; female; feminine; symptom

Lifestyle
2013
Inflammatory Bowel Disease Symptom Severity is Influenced by Hormone Fluctuations in Many Women with IBD

Summary

In a study of over 1200 females with inflammatory bowel disease, or IBD, more than half reported worsening disease symptoms during menstrual periods. Women who reported worse symptoms during menses were younger than those who did not. About 10% said that hormonal contraceptive agents improved their symptoms, but about 8% said that hormonal contraceptive agents made their symptoms worse. Among women who had reached menopause, an older age of IBD onset was associated with worse symptoms after menopause. This study shows that symptom severity is influenced during times of hormone changes in many women with IBD and that duration of IBD may play a role in hormonally mediated symptoms.


Full Scientific Abstract

Keywords
hormone; hormonal; women; women’s health; female; feminine; hormone influence; hormone fluctuation; ovulation; menarche; menses; menopause; age; active disease flare; risk; community; population

Lifestyle
2012
A Randomized Trial of Electronic (E-mail) Educational Prevention Messages within the CCFA Partners Cohort

Summary

It is recommended that patients with inflammatory bowel disease, or IBD, get an influenza, or "flu" vaccine every year. The flu vaccine is especially important for patients taking medication to suppress their immune system. This study showed that 1 in 3 IBD patients did not get a flu vaccine in 2011. Receiving an email reminder from the CCFA Partners program did not make patients more likely to get a flu vaccine.


Full Scientific Abstract

Keywords
education; preventive interventions; prevention; intervention; community; population; outreach

Research Methods, Study Updates
2012
Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease.

Summary

People with inflammatory bowel disease, or IBD, often say that specific foods make their symptoms better or worse, but there is no good scientific evidence to support a specific diet. In this study, nearly 7,000 patients with Crohn's disease or ulcerative completed a survey about the their diet and IBD symptoms. Yogurt and rice were most often reported to improve symptoms. Vegetables, fruit, spicy foods, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high fiber foods, fatty foods, seeds, coffee and beans were most frequently reported to worsen symptoms. In general, patients with ulcerative colitis ate more fruit, vegetables, beans and popcorn than patients with Crohn's disease. Crohn's disease patients with an ostomy tended to eat more cheese, sweetened beverages, milk, pizza and processed meats than Crohn's disease without an ostomy.


Full Published Manuscript

Keywords
active disease; flare; prevention; risk

Diet, Lifestyle, Alternative Therapies
2012
Development of an Internet-Based Cohort of Patients with Inflammatory Bowel Diseases (CCFA Partners): Methodology and Initial Results

Summary

This manuscript describes the creation of CCFA Partners and the first 7,819 participants. Of the people who took the first surveys, 72% were women, the median age was 42 years, 63% had Crohn's disease, 34% had ulcerative colitis and 3% had other IBD. CCFA Partners is a unique resource to study patient outcomes and satisfaction, quality of care and changes in disease management over time.


Full Published Manuscript

Keywords
community; population; resource; outreach

Research Methods, Study Updates
2011
Quality of Life in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort

Summary

In a survey of over 7000 patient with Crohn's disease or ulcerative colitis, patients had about the same quality of life for both diseases. Patients with severe ulcerative colitis had low quality of life, but quality of life returned to around average when patients had surgery to remove their colon and replace it with an internal pouch. These results show that status of inflammatory bowel disease can be an important factor in quality of life.


Full Scientific Abstract

Keywords
quality of life; community; population

Research Methods, Lifestyle

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