Following people with rare diseases over time
Part of Blood & lymphatic, Bones, joints & muscles, Brain & nervous system, Cancer, Digestive system, Genetic & congenital, Heart & circulation, Hormones & metabolism, Immune system & allergy, Infections, Lungs & breathing, Mental health, Skin clinical trials.
This study follows people with rare diseases over time to learn more about how these conditions progress and how they are treated. Joining may help researchers understand your disease better and find better ways to care for others.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You must have a rare disease that affects fewer than 200,000 people in the U.S. (like Sickle Cell Disease, Cystic Fibrosis, or ALS).
- You or your legal representative must be willing to give permission to join the study.
- You must live in the United States and be able to share your medical records.
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
Similar studies
Other trials that look related to this one.
This study follows adults over time who have a very rare inherited brain disease, or whose illness seems like it may run in families. The goal is to better understand these conditions and how they progress.
This study keeps a registry (a structured list) of people with rare diseases and may also track how the condition changes over time. It can help researchers better understand rare illnesses and find gaps in care, which may improve future treatments.
This study looks at how families adapt and how relationships change over time when a child has a rare disease. It involves both the child and their parents completing questionnaires and possibly a smartphone app for a few days.
This study collects and stores samples and related medical information for people with rare diseases or suspected genetic conditions. It may help researchers better understand these conditions and develop future testing and treatments.
This study brings together experts to analyze your medical information and genetic data, aiming to find a diagnosis for your rare or undiagnosed condition. If you're a Mayo Clinic patient with unexplained symptoms, this could be a chance to get answers.
This study looks at how young adults aged 15–25 with rare genetic conditions (like certain bone, skin, hearing, or facial conditions) are doing in school, work, and social life. Researchers want to understand what helps or prevents young people with these conditions from being included in their communities.
Hear when a new Alpha-Thalassemia trial opens
We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.