Help & Resources

Frequently Asked Questions

Everything you need to know about Trial Friend, how we source our data, and how clinical trials work.

About Trial FriendClinical TrialsRare DiseasesPrivacy & DataTrusted Sources

About Trial Friend

What is Trial Friend?

Trial Friend is a free rare disease information hub built for patients, caregivers, and families. It covers the full journey: disease guides for 204 rare conditions, a Drug Decoder with 274 medications (side effects, mechanisms, key trials, pricing context), interactive treatment timelines, drug comparison charts, an AI chat assistant, clinical trial search with plain-English eligibility translation, trial matching, medication conflict checking, gene search, symptom-based disease lookup, a learning center, and genetic testing lab directories.

Is Trial Friend a medical service?

No. Trial Friend is an informational tool, not a medical service. It does not provide medical advice, diagnose conditions, or recommend specific treatments. Always consult your doctor or healthcare provider before considering participation in a clinical trial.

Is Trial Friend really free?

Yes, Trial Friend is completely free with no fees, premium tiers, or paywalls. Every feature, including trial search, Match Me scoring, symptom lookup, and gene search, is available at no cost. Access to clinical trial information should not have a price tag.

Do I need to create an account?

No account is required. You can search trials, browse disease pages, use Match Me, and explore every feature without signing up. The only optional feature requiring an email is alerts, which notify you when new trials open for a specific condition.

Who built Trial Friend?

Trial Friend is built and maintained by one person, Jason Hunter, an independent writer who spent 20 years in healthcare and pharma marketing and built this site after someone close to him was diagnosed with a rare disease. The platform is independently developed and not affiliated with any pharmaceutical company, hospital, or research institution. Learn more on our About page.

Does Trial Friend sell my data?

No. Trial Friend does not sell, share, or monetize personal data. Unlike platforms such as Facebook or TikTok, we do not track you across websites, build advertising profiles based on your health searches, or sell your data to brokers. If we display an ad, the advertiser sees aggregate numbers (like total impressions), not who you are or what you searched for. See the Privacy Policy for full details.

What is the Drug Decoder?

The Drug Decoder is a collection of 274 drug information pages covering FDA-approved and investigational medications for rare diseases. Each page includes the drug's mechanism of action, side effects, how it's administered, key clinical trial results, approval history, pricing context, and manufacturer information. All drug content is sourced from FDA prescribing labels and published clinical research. Medical terms throughout the pages have glossary tooltips that explain them in plain language when you hover or tap.

What are Treatment Arcs?

Treatment Arcs are interactive treatment timelines available on select drug pages. You answer four questions: when you started the medication, which formulation you take, whether you've had follow-up labs, and which side effects you're experiencing. Based on your answers, the timeline shows where you are in the typical treatment journey, what to expect next, questions to ask your doctor, red flags to watch for, and how clinical trials might be relevant at your stage. Your answers are saved in your browser's localStorage so your progress is still there if you come back later. Nothing is sent to our servers, stored in a database, or included in analytics. You can reset your timeline at any time.

What are the drug comparison charts?

Drug comparison charts show FDA-approved treatments for a specific disease side by side, including how each drug works, how it's given, dosing frequency, where you receive it, and when it was approved. These charts help patients and caregivers understand the differences between treatment options before discussing them with their doctor. Comparison data is sourced from FDA prescribing labels.

How does the AI chat assistant work?

The AI chat assistant is available on disease and drug pages. It can answer questions about conditions, treatments, side effects, clinical trials, and more, drawing on FDA prescribing labels, published clinical trials, and treatment guidelines. Chat messages are sent to our server for processing and stored anonymously using a random session ID with no connection to your identity. Chat logs are automatically deleted after 90 days. The chat assistant does not provide medical advice and should not be used as a substitute for consultation with your healthcare provider.

Does Trial Friend accept advertising or sponsorships?

Trial Friend may display clearly labeled ads or sponsored content from pharmaceutical companies, patient foundations, advocacy groups, and research organizations. All paid placements are marked as sponsored and are visually separate from our editorial content. Sponsors have no input into drug pages, treatment arcs, comparison charts, or any medical information. Our drug content is independently sourced from FDA prescribing labels and published clinical trials. We do not share any personal data with advertisers or sponsors.

Clinical Trials

Where does the trial data come from?

All clinical trial data comes directly from ClinicalTrials.gov, the official registry maintained by the U.S. National Library of Medicine. Trial Friend queries the ClinicalTrials.gov API v2 in real time, so results reflect the latest posted information including trial status, eligibility criteria, locations, sponsors, and results. Keep in mind that recruitment statuses on ClinicalTrials.gov can sometimes lag behind recent FDA decisions, sponsor announcements, or enrollment changes. We always recommend confirming a trial's current status directly with the study coordinator.

How often is trial data updated?

Trial data is fetched live from ClinicalTrials.gov every time you load a page. There is no caching delay on our end, so the data is as current as what ClinicalTrials.gov itself shows. Each trial card displays a freshness indicator based on when the trial sponsor last updated its record. However, trial sponsors may not update their ClinicalTrials.gov listings immediately after FDA decisions, enrollment changes, or program discontinuations, so statuses can sometimes be outdated. Always confirm directly with the study coordinator.

What do the trial phases mean?

Clinical trial phases indicate how far a treatment has progressed in testing. Phase 1 tests safety in a small group (20-80 people). Phase 2 evaluates effectiveness and side effects (100-300 people). Phase 3 compares the treatment to existing options in a large group (1,000-3,000 people). Phase 4 monitors long-term effects after FDA approval.

What does "Recruiting" mean?

"Recruiting" means the trial is actively enrolling participants right now. "Not Yet Recruiting" means the trial is registered but has not started enrollment. Recruiting trials offer the best opportunity to join. Trial Friend highlights recruiting trials by default so you see the most actionable options first.

How does the AI translation work?

The "Translate to plain English" feature sends a trial's eligibility criteria to an AI model that rewrites complex medical language into everyday terms. It highlights key requirements like age ranges, prior treatments, and medical conditions. You can also hover or tap underlined medical terms throughout the site for instant plain-language definitions.

Can Trial Friend tell me if I qualify for a trial?

The Match Me tool asks about your condition, age, location, and treatment history, then scores how well each trial fits your profile. However, only the trial's research team can determine actual eligibility. Match Me narrows hundreds of trials down to the most relevant ones so you can focus your research.

Why do some trials show no US locations?

Many clinical trials are conducted exclusively outside the United States, with sites only in Europe, Asia, or other regions. Trial Friend shows US locations first when available. Use the location filter in Match Me to focus on trials near you, or browse international trials if you are open to traveling for treatment.

Are clinical trials safe?

Clinical trials are regulated by the FDA and monitored by institutional review boards (IRBs) that review every study protocol for participant safety. All trials require informed consent, meaning you are told about potential risks and benefits before joining. Safety monitoring occurs throughout the trial, and participants can withdraw at any time without penalty or loss of standard medical care.

Do clinical trials cost money to participate in?

Most clinical trials cover the cost of the experimental treatment and study-related procedures at no charge to participants. Some trials also reimburse travel expenses or provide stipends. Standard-of-care costs like routine doctor visits may still be billed to your insurance. Financial details are outlined in the informed consent document before you enroll.

What is a placebo-controlled trial?

A placebo-controlled trial compares an experimental treatment against an inactive substance (the placebo) to measure the treatment's true effect. Participants are randomly assigned to receive either the real treatment or the placebo. Not all trials use placebos. In rare disease trials, placebos are less common because withholding potential treatment from a small patient population raises ethical concerns. You are always informed if a placebo is involved.

How long do clinical trials last?

Clinical trial duration varies widely depending on the condition, treatment type, and trial phase. Phase 1 trials may last a few months, while Phase 3 trials can run for several years. Each trial listing on Trial Friend shows estimated start and completion dates sourced from ClinicalTrials.gov, so you can gauge the expected time commitment before contacting the research team.

Rare Diseases

What counts as a rare disease?

In the United States, a rare disease is any condition affecting fewer than 200,000 people, as defined by the Orphan Drug Act. The European definition is fewer than 1 in 2,000 people. There are over 7,000 known rare diseases, and collectively they affect approximately 30 million Americans and 300 million people worldwide.

How does the Symptom Finder work?

The Symptom Finder uses the Human Phenotype Ontology (HPO), a standardized database of over 18,000 clinical features mapped to thousands of diseases. When you select symptoms, Trial Friend uses information-content scoring inspired by the LIRICAL methodology to rank matching diseases. Rarer symptoms carry more diagnostic weight than common ones, producing more accurate results.

What is Gene Search?

Gene Search lets you look up any gene name (such as GBA, TTN, or CFTR) and see which diseases are associated with it, along with active clinical trials targeting that gene. It combines data from ClinicalTrials.gov and the Open Targets Platform to connect genetic information directly to available research opportunities.

What is the Genetic Testing section on disease pages?

Each disease page lists laboratories that offer clinical genetic testing for that condition, sourced from the NIH Genetic Testing Registry (GTR). Labs marked "Certified" meet federal CLIA quality standards for clinical laboratory testing. US-based labs appear first. The section includes the genes each lab tests, turnaround times, and direct links to order testing.

How is the drug pipeline information sourced?

The drug pipeline section on each disease page shows both FDA-approved and investigational therapies. Approved drug data comes from OpenFDA. The pipeline visualization showing drugs in preclinical through Phase 4 stages is sourced from the Open Targets Platform, which aggregates data from ChEMBL, ClinicalTrials.gov, and FDA databases.

How are rare diseases diagnosed?

Rare disease diagnosis often involves genetic testing, specialist evaluation, and sometimes years of medical investigation. The average rare disease patient waits 4 to 7 years for a correct diagnosis, often seeing multiple specialists. Trial Friend's Symptom Finder uses the Human Phenotype Ontology to help patients identify potential conditions based on their symptoms, which can guide conversations with their doctors.

What is an orphan drug?

An orphan drug is a medication developed to treat a rare disease. The U.S. Orphan Drug Act of 1983 provides incentives for pharmaceutical companies to develop these treatments, including tax credits, reduced FDA fees, and seven years of market exclusivity after approval. Without these incentives, many rare disease treatments would not be economically viable to develop.

How many rare diseases have FDA-approved treatments?

Fewer than 10 percent of the over 7,000 known rare diseases have an FDA-approved treatment. This means the vast majority of rare disease patients rely on off-label therapies, symptom management, or clinical trials for access to potential treatments. Trial Friend tracks active clinical trials and drug pipeline information for 204 rare conditions to help patients find research opportunities.

What is the Orphan Drug Act?

The Orphan Drug Act is a 1983 U.S. federal law that encourages pharmaceutical companies to develop treatments for rare diseases affecting fewer than 200,000 Americans. It provides incentives including tax credits for clinical research costs, waived FDA application fees, and seven years of market exclusivity after approval. Since its passage, over 600 orphan drugs have received FDA approval.

Privacy & Data

What data do you collect?

Trial Friend uses Google Analytics 4 and a custom first-party analytics system (powered by Supabase) to understand how visitors use the site, including pages visited and feature usage. This data is not linked to your email address or any personal information. AI chat conversations are sent to our server for processing and stored anonymously using a random session ID. Treatment timeline (Treatment Arc) responses are saved in your browser's localStorage and are never sent to our servers. If you sign up for email alerts, your email and selected condition are stored. Trial Friend does not sell data to third parties or build advertising profiles.

Do you use cookies?

Google Analytics 4 sets cookies like _ga (2-year expiry) and _gid (24-hour expiry) to distinguish unique visitors. Our custom Supabase analytics does not set any cookies. We do not use advertising or remarketing cookies. For visitors in the EU/EEA and UK, analytics cookies are only set after you accept our cookie consent banner. We also use localStorage to remember your consent choice, sessionStorage for temporary visit preferences, and localStorage for Treatment Arc progress (so your treatment timeline answers persist between visits). Treatment timeline data does not use cookies. You can decline cookies or clear localStorage from your browser at any time.

Is my search history saved?

Trial Friend stores anonymous usage data such as page views and feature activity to improve the site, but this data is not tied to you as an individual. There are no user accounts, no login history, and no way to connect activity back to a specific person. Each browsing session starts fresh with no stored personal history.

How is Trial Friend different from social media when it comes to privacy?

Platforms like Facebook and TikTok track you across the internet, build detailed advertising profiles based on your behavior, and sell that data to advertisers. Trial Friend does none of that. We do not track you across websites, we do not build profiles based on your health searches, and we do not sell your data to anyone. If we display a sponsored ad from a pharma company or foundation, the advertiser sees only aggregate numbers like total impressions. They never see who you are, what condition you searched for, or what drugs you looked at.

Trusted Sources

Trial Friend pulls data from government databases, academic institutions, and established medical organizations. Here is every source we use and how it powers the site.

Clinical Trial Data

ClinicalTrials.gov
U.S. National Library of Medicine (NLM)
The U.S. National Library of Medicine's official registry of clinical studies. Our primary data source for all trial information, including status, eligibility criteria, locations, sponsors, and results.

Rare Disease Information

Orphanet
INSERM / European Commission
European reference portal for information on rare diseases. Powers our Symptom Finder through the Human Phenotype Ontology (HPO) disease-phenotype annotations.
NIH Genetic and Rare Diseases Information Center (GARD)
National Institutes of Health (NIH)
Patient-friendly information on rare diseases from the National Institutes of Health. A trusted reference for disease overviews and patient resources.
National Organization for Rare Disorders (NORD)
NORD
Leading patient advocacy organization for rare disease communities. Provides disease guides, patient assistance programs, and research updates.
Online Mendelian Inheritance in Man (OMIM)
Johns Hopkins University
Comprehensive catalog of human genes and genetic disorders, with detailed clinical and molecular information for each condition.

Symptom & Phenotype Data

Human Phenotype Ontology (HPO)
The Jackson Laboratory / Monarch Initiative
Standardized vocabulary of over 18,000 phenotypic abnormalities. Powers our Symptom Finder's disease-matching algorithm with precise phenotype-to-disease mappings.
LIRICAL
Robinson et al., AJHG 2020
Likelihood Ratio Interpretation of Clinical Abnormalities. Our scoring algorithm is inspired by LIRICAL's information-content methodology for phenotype-driven genomic diagnostics.

Drug & Treatment Data

OpenFDA
U.S. Food & Drug Administration (FDA)
Open-access APIs from the U.S. Food and Drug Administration. We use this for FDA-approved drug information shown on disease pages.
Open Targets Platform
EMBL-EBI / Wellcome Sanger Institute / GSK
Drug pipeline and target validation data aggregated from ChEMBL, ClinicalTrials.gov, and the FDA. Powers the drug pipeline visualization on disease pages.

Genetic Testing

NIH Genetic Testing Registry (GTR)
National Center for Biotechnology Information (NCBI)
Comprehensive registry of genetic tests and laboratories. We query GTR to show which labs offer clinical genetic testing for each disease, including CLIA certification status.

Research & Publications

PubMed
National Library of Medicine (NLM)
Database of over 36 million biomedical literature citations. We surface recent research articles on each disease page to help patients and caregivers stay current.

Important: Trial Friend is not a medical service and does not provide medical advice. The information on this site is for educational purposes only. Always consult your healthcare provider before making decisions about clinical trial participation or treatment.