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What is ICP Care?
ICP Care is a patient-focused nonprofit organization dedicated to Intrahepatic Cholestasis of Pregnancy (ICP), a rare liver condition that develops during pregnancy and is best known for intense itching. Its stated mission is to protect pregnancies and families from ICP by spreading research-based information, supporting affected patients, and funding work toward preventing stillbirth. The site's framing — "Fight the Itch. Save a Life." and "Don't Ignore the Itch" — reflects its core message: the itching is not a minor pregnancy nuisance but a symptom worth reporting to a clinician.
What the organization actually offers
- Information for patients and providers. ICP Care publishes material designed to be downloaded, printed, and shared with healthcare providers, so a patient can bring reliable information into an appointment rather than relying on memory or rumor.
- Support groups. Because ICP is rare, diagnosis often feels isolating; the site connects patients with others who have the same diagnosis.
- A patient registry. Open internationally, the registry collects pregnancy journeys to support research, on the reasoning that a rare disease needs many participants before care and treatment can improve.
- Practical self-care guidance. It offers diet recommendations framed as potentially helping manage symptoms, alongside general pregnancy nutrition advice.
- Community and remembrance. News and stories cover topics such as Pregnancy and Infant Loss Awareness Month and twin pregnancies, where the site notes ICP rates are far higher than in singleton pregnancies.
Who it is for, and how to use it
The most direct audience is someone newly diagnosed with ICP who wants to understand the condition and find others in the same situation. A second audience is partners, family, and friends trying to grasp why the diagnosis is taken seriously. A third is clinicians and researchers who want patient-facing materials or registry participation.
If you have been diagnosed, a practical first step is to print the condition overview and bring it to your next appointment, then ask your provider directly how your bile acid levels and delivery timing will be monitored. If you are pregnant and experiencing persistent itching, particularly on the palms and soles, treat the site as background reading and contact your provider rather than self-diagnosing.
Trade-offs to keep in mind
ICP Care is an advocacy and support organization, not a clinical service. It cannot diagnose you, interpret your lab results, or replace obstetric care, and its diet content is framed as symptom support rather than treatment. Its research value depends on participation — the registry only becomes useful as more people contribute. For clinical detail, pair it with a general pregnancy resource such as ACOG or a rare-disease reference such as NORD.
What are the symptoms of Intrahepatic Cholestasis of Pregnancy that I shouldn't ignore?
The symptom to take most seriously is itching—especially itching on the palms and soles, or itching that gets worse at night—because that is the hallmark of Intrahepatic Cholestasis of Pregnancy (ICP). ICP Care's own headline makes the priority clear: "Don't Ignore the Itch." If you are pregnant and itching is intense, persistent or unexplained, contact your obstetric provider rather than waiting for your next routine visit.
Symptoms worth reporting promptly
- Itching without a rash, particularly on the palms and soles, and often worse at night.
- Itching that spreads or becomes severe enough to disturb sleep.
- Dark urine or pale, clay-colored stools—possible signs of bile flow problems.
- Jaundice (yellowing of the skin or eyes), which is uncommon but significant.
- Right upper abdominal discomfort, nausea, or generally feeling unwell alongside the itching.
Symptoms that need urgent, same-day care
- Decreased fetal movement—any noticeable reduction in your baby's usual activity.
- Severe abdominal pain, persistent headache, vision changes, or sudden swelling, which can point to other pregnancy complications.
- Signs of preterm labor, such as regular contractions, fluid leaking, or bleeding.
These urgent signs are not specific to ICP, but they should never wait.
A practical next step
Ask your provider about liver function tests and serum bile acids, since ICP is diagnosed through blood work rather than symptoms alone. ICP Care's site points readers toward research-based information they can download and share with healthcare providers—useful if you want a concise summary to bring to an appointment. The organization also runs support groups and an international patient registry, which can help you connect with others who have had the same diagnosis.
Who this matters most for
ICP is uncommon in singleton pregnancies but considerably more likely in twin pregnancies, where ICP Care reports rates of roughly 20–25%, likely due to higher hormone levels. If you are carrying twins, or you have had ICP in a previous pregnancy, mention that history early so your provider can decide how closely to monitor you. Trust your instincts: if the itch feels wrong, get it checked.
How is Intrahepatic Cholestasis of Pregnancy diagnosed and treated during pregnancy?
Intrahepatic cholestasis of pregnancy (ICP) is diagnosed mainly by symptoms plus blood tests, and treated by managing the itch, monitoring mother and baby closely, and planning delivery at the right time. It is not a condition you can diagnose or treat on your own, so the practical first step is to contact your obstetric provider if you have persistent itching, especially on the palms and soles, with no rash.
How diagnosis usually works
- Symptom history: The hallmark is intense itching (pruritus) without a skin rash, often worst at night and often starting on the palms and soles. Your clinician will ask when it began, how severe it is, and whether you have other risk factors such as a previous pregnancy with ICP or a twin pregnancy.
- Blood tests: The key test is a serum bile acid level. Liver enzymes (ALT, AST) are also commonly checked. In ICP, bile acids are elevated, and liver enzymes may be elevated too. Some providers repeat bile acid testing because levels can change.
- Ruling out other causes: Because itching and abnormal liver tests have many possible causes, clinicians may check for other liver or skin conditions, viral hepatitis, gallstones, or medication effects. This is why ICP is a diagnosis made by a healthcare provider, not by symptom matching alone.
- Twin pregnancies: ICP is more likely in twin pregnancies because of higher hormone levels. According to ICP Care, rates in twin pregnancies are between 20–25%, compared with about 0.3–0.5% in singleton pregnancies ICP Care. That difference matters: if you are carrying twins and itch, report it promptly.
How treatment and monitoring typically work
- Symptom relief: Treatment aims first at reducing the itch. Options may include ursodeoxycholic acid (UDCA) and, in some cases, other medications for itching. Your provider will decide what is safe and appropriate for you.
- Monitoring bile acids and liver function: Repeat blood tests help show whether the condition is stable, improving, or worsening. Bile acid levels are especially important because higher levels are associated with higher risk.
- Fetal monitoring: Because ICP is linked to a higher risk of stillbirth and other complications, providers often recommend more frequent monitoring, such as nonstress tests or biophysical profiles, especially as the pregnancy advances.
- Delivery planning: The main treatment decision is timing of delivery. Many providers recommend delivery around 37 weeks for ICP, but the exact timing depends on bile acid levels, how the pregnancy is progressing, and other factors. Delivery is the definitive treatment because ICP resolves after the baby is born.
- Self-care: A healthy diet and general pregnancy self-care may help you manage symptoms, but they do not replace medical treatment. ICP Care offers diet recommendations as supportive self-care, not as a cure ICP Care.
What to do next
If you are pregnant and itching persistently, call your obstetric provider and ask specifically about checking bile acids. If you have already been diagnosed, ask your provider three concrete questions: What are my current bile acid levels? What monitoring schedule do you recommend? And at what gestational age are we planning delivery? For peer support and research-based information you can share with your provider, ICP Care provides patient resources and an international patient registry ICP Care.
What support groups and online community resources does ICP Care offer for patients?
ICP Care's main community offerings are peer support groups, an international patient registry, and a newsletter that keeps patients and families connected to news, events, and volunteer opportunities.
Support groups
The site describes a "supportive online community" for people diagnosed with Intrahepatic Cholestasis of Pregnancy, noting the diagnosis can feel overwhelming, scary, and isolating. Its listed support route is connecting with others who share the same diagnosis through support groups. For a newly diagnosed patient, this is typically the fastest practical step: hearing how others managed symptoms, monitoring, and delivery timing can make a rare diagnosis feel less isolating.
ICP Patient Registry
ICP Care invites patients to join its ICP Patient Registry, which it says is open internationally. The stated purpose is to aid research into ICP and improve future management. Because ICP is rare, the site argues that more participants sharing their pregnancy journeys means more can be learned about care, treatment, and support.
This is a research participation option rather than a chat-based support group. It suits patients who want to contribute data about their own pregnancy to help future patients, and it may also appeal to those who want their experience counted in a condition where cases are relatively few.
Mailing list and community updates
The site offers a newsletter signup for information about its mission, events, volunteer opportunities, and more. This is a low-commitment way to stay informed, especially for people who are not seeking immediate peer conversation or who want to follow advocacy and awareness efforts over time.
Who each option fits
- Newly diagnosed and anxious: Start with the support groups, where peer experience is the main value.
- Want to advance research: Consider the ICP Patient Registry, which is explicitly framed as a way to improve future management.
- Want occasional updates: Use the mailing list rather than a group if you prefer less frequent contact.
A useful next step is to open ICP Care's support group page and registry page and decide which fits your situation: peer conversation for day-to-day reassurance, or registry participation to help improve care for others.
How can I join the ICP Care Patient Registry and why does it matter for research?
Joining the ICP Care Patient Registry is a way to contribute your pregnancy experience to research on Intrahepatic Cholestasis of Pregnancy (ICP). The registry is described as open internationally, so participants are not limited to one country. You join by signing up through the registry section of ICP Care, where you can share information about your pregnancy journey.
Why participation matters
ICP is a rare disease, which makes it hard to gather enough cases for meaningful research. The registry's value comes from scale: the more people who contribute their details, the more researchers can learn about how ICP behaves, how it is managed, and how outcomes can be improved. For a condition where diagnosis and management decisions can be urgent, that kind of pooled data can help shape better care, treatment and support for future pregnancies.
What you are actually contributing
- Your own experience of diagnosis, symptoms and pregnancy course.
- Information that helps researchers study patterns across many pregnancies rather than isolated cases.
- A larger dataset for a rare condition, which is otherwise difficult to assemble.
A practical next step
If you have been diagnosed with ICP, visit ICP Care and look for the patient registry sign-up. Before you start, gather your pregnancy and diagnosis details so the entry is accurate. If you are unsure whether your case qualifies, the site's support groups and mailing list are reasonable places to ask before committing.
Who benefits most
The registry is most relevant to people who have personally experienced ICP, including those with twin pregnancies, since ICP rates in twin pregnancies are notably higher than in singleton pregnancies. Even if your pregnancy is over, your recorded experience can still contribute to research that improves future management.
What is the risk of ICP in twin pregnancies compared to singleton pregnancies?
Twin pregnancies carry a substantially higher risk of intrahepatic cholestasis of pregnancy (ICP) than singleton pregnancies. According to ICP Care, ICP rates in twin pregnancies run between 20–25%, compared with roughly 0.3–0.5% in singleton pregnancies. That is a difference of roughly 40- to 80-fold, which makes twin pregnancy one of the strongest known risk factors for the condition.
Why the gap is so large
ICP is thought to have a hormonal cause, driven largely by elevated pregnancy hormones affecting bile flow in the liver. A twin pregnancy produces higher hormone levels than a singleton pregnancy, which plausibly explains the higher incidence. This is a widely held explanatory model rather than a proven mechanism, so treat the hormonal link as the leading theory.
What this means in practice
- For twin expectant parents: itching that is new, persistent, or worse at night — especially on the palms and soles — deserves prompt reporting rather than a wait-and-see approach. The high baseline risk changes the threshold for testing.
- For clinicians: the pre-test probability is high enough that twin pregnancy is a reasonable prompt for earlier bile acid testing when symptoms appear.
- For anyone reading statistics: the 20–25% figure comes from research cited by an advocacy organization, not a clinical guideline, so it is best used to frame risk rather than to set a diagnostic cutoff.
A practical next step is to ask your obstetric provider what bile acid testing schedule they use for twin pregnancies, and to note your symptoms with dates so the pattern is easy to describe at an appointment.
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