Health Resources for Families

MedlinePlus is a health information resource from the National Library of Medicine (NLM) that focuses on providing easy-to-understand, high-quality health information. MedlinePlus includes information on symptoms, causes, treatment, and prevention for more than 1,000 diseases, illnesses, health conditions, and wellness issues. The website also includes information on medications and dietary supplements, genetics, medical tests, a medical encyclopedia, and a video library with games.

MedlinePlus is a useful resource for children and their families who are staying at the Children’s Inn because it provides easy-to-understand health information for people of all health literacy levels. There is a separate section of the website that just includes links to easy-to-read health information.

Additionally, many families who stay at the Children’s Inn are looking for health information in languages other than English. For these families, MedlinePlus provides health information in more than 55 languages.

MedlinePlus Magazine is a quarterly publication produced by the National Library of Medicine (NLM). It provides information on National Institutes of Health (NIH)-supported research as well as health and wellness information. The magazine includes stories about famous people and how they have handled their health challenges, as well as stories about people who have received care at NIH.

Other features of the magazine include research highlights from NIH and an A-Z index of health topics covered in the magazine. Children’s Inn patients and their families can read through the magazine’s current issue and past issues to learn more about NIH research. MedlinePlus Magazine is both educational and entertaining and allows people to learn more about the valuable research that takes place at NIH.

The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH). GARD provides the public with access to current, reliable, and easy-to-understand information about rare and genetic diseases. GARD has webpages on many different rare and genetic diseases and conditions, a listing of advocacy organizations, and a glossary of genetic terms.

The GARD Information Navigator is an interactive tool that can quickly help people find information and build a customized search results webpage. For select diseases and conditions, the GARD Information Navigator allows you to select different topic areas, including diagnosis, treatment, financial aid, finding a specialist, and more. After you choose your topic areas, you will get a customized results page with information on each selected topic.

If additional help is needed, GARD Information Specialists are available by phone or email to answer questions. 

Many of the children who are staying at the Children’s Inn have a genetic or rare disease. The GARD website is an excellent resource for the Children’s Inn visitors to find a wide range of resources about genetic and rare diseases. The website presents information in an easy-to-understand format, and information is also available in Spanish.

PubMed is a database that contains more than 32 million citations and abstracts of biomedical literature. It is the largest database of health-related journal articles, and it is maintained by the National Library of Medicine (NLM). While PubMed does not include full-text journal articles on the website, links to many full-text articles can be found in the PubMed records. To find even more full-text journal articles, people can search PubMed Central (PMC), which is a free full-text archive of biomedical and life sciences journal articles. PMC contains more than 6 million full-text articles from thousands of journals.

The PubMed User Guide can help people learn how to navigate PubMed and how to effectively search for journal articles. There are also several online trainings and tutorials to help people learn how to use PubMed.

Families who stay at the Children’s Inn have varying levels of health literacy. Many families are familiar with the scientific literature about their child’s disease or condition. They have spent a lot of time researching the disease and are comfortable reviewing scientific literature. These families may benefit from using PubMed to research and learn more about their child’s disease.

ClinicalTrials.gov provides patients, their family members, healthcare professionals, researchers, and the public with easy access to information on publicly and privately supported clinical trials on a wide range of diseases and conditions. ClinicalTrials.gov is maintained by the National Library of Medicine (NLM). People can search for trials by keyword, geographic location, condition or disease, and eligibility criteria. Some clinical trial records include information on study results once a study is completed. The website also includes information for people who want to learn more about clinical trials, including information on different types of clinical trials and information on participating in clinical trials.

ClinicalTrials.gov is useful for Children’s Inn visitors because the children who are staying at The Inn are participating in clinical trials occurring at the National Institutes of Health (NIH). Children’s Inn visitors can search ClinicalTrials.gov to learn about trials that are studying the disease or condition they are interested in. The study results for trials can also be helpful for people to review, as they can learn more about the outcomes of completed clinical trials. 

The National Institutes of Health (NIH) Clinical Research Trials and You website is a comprehensive resource to learn about clinical trials. It includes information about the basics of clinical trials, information on how to find a clinical trial, and personal stories from people who have participated in clinical trials. This website provides an overview of what is involved in participating in a clinical trial. It also includes links to additional educational resources about clinical trials, including resources in Spanish.

The website also includes information for parents and children to learn more about pediatric participation in clinical trials. The families who are staying at the Children’s Inn will find these resources helpful as their child takes part in clinical trials at NIH. 

The Children and Clinical Studies website includes information on why it is important to include children in clinical trials, how children benefit from clinical research, and measures to ensure children’s safety while they are participating in clinical trials. The website is funded by several private and public organizations, including the National Institutes of Health (NIH), and the Principal Research Directors work at the National Heart, Lung, and Blood Institute (NHLBI).

The website includes a section specifically for children that includes a link to information on how to download a video game that helps children learn about clinical studies and a website that has comics, videos, and activities to learn about pediatric clinical trials.

Children’s Inn patients and their families will find this website useful because most information available online about clinical trials focuses on adult clinical trial participants. This website provides information specifically about children and clinical research.

The Centers for Medicare & Medicaid Services (CMS) administers Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP).

Health insurance is an important topic for children and families who are staying at the Children’s Inn. In the Bridging the Information Gap: Assessing the Medical Information Needs of Families at The Children’s Inn report, it was noted that young adults who were staying at the Children’s Inn spoke of a need to understand how to apply for health insurance once they are no longer covered under their parents’ health insurance plan. They were also interested in learning how to apply for disability benefits. The CMS website includes information for both children and families on these topics.

HealthCare.gov is the official site of the Affordable Care Act. People can research and enroll in health insurance on this website. The website includes information in several languages.

HealthCare.gov includes information on how to apply for Medicaid and the Children’s Health Insurance Program (CHIP). CHIP provides low-cost health coverage to children in families that earn too much money to qualify for Medicaid.

In the Bridging the Information Gap: Assessing the Medical Information Needs of Families at The Children’s Inn report, young adult patients at the Children’s Inn expressed an interest in needing to learn more about health insurance, including how to compare insurance plans and how to apply for health insurance. The HealthCare.gov website will help these young adults compare insurance plans and apply for coverage. The website includes information on how to get on or stay on a parent’s health insurance plan, information for young adults under 30 years old, and information for students who need health insurance. 

MentalHealth.gov provides access to mental health information, including information on different types of mental health problems and ways to get help for mental health issues. The website also includes information for parents and caregivers, as well as information for young people who are looking for mental health help.

In the Bridging the Information Gap: Assessing the Medical Information Needs of Families at The Children’s Inn report, it was noted that families staying at the Children’s Inn indicated that they are looking for resources that promote mental health care. Living with an illness, particularly a rare illness or disease, can take a toll on a person’s mental health. Caring for a child living with an illness can also cause stress for parents and caregivers. Mental health resources are important to provide to the families staying at the Children’s Inn.  

The National Institute of Nursing Research (NINR) developed the Palliative Care: Conversations Matter campaign to increase awareness of and improve communications around pediatric palliative care for children and teens living with serious illnesses. This website includes information such as fact sheets, brochures, videos, and links to other resources for patients and their families about pediatric palliative care. Many of the materials are also available in Spanish.

The families who are staying at the Children’s Inn will find the information on this website useful for navigating palliative care for their child who is receiving treatment. Many of the children receiving treatment at NIH are seriously ill and may benefit from palliative care. While there are many resources about palliative care for adults, there are fewer resources available for children. The families staying at the Children’s Inn may not be aware of palliative care resources that are available specifically for children, so this website will be useful for them.

The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD works with patient organizations on education, advocacy, research, and patient services programs for rare disorders.

NORD’s Rare Disease Database includes an A-Z index of rare diseases and includes a brief overview of each disease, with information on the symptoms, diagnosis, causes, treatments, and links to additional information. The NORD website also has a video library with educational videos on rare diseases, links to health insurance resources for each state, and information on clinical trials.

The website also includes information on patient assistance programs. These programs help patients obtain medications, provide financial assistance for health insurance costs, and provide travel assistance that can be used to travel to participate in clinical trials or consult with disease specialists. 

The NORD website is a useful resource for families who are staying at the Children’s Inn, as it provides a wide variety of information on rare diseases, as well as links to patient organizations that can help families connect with services and obtain financial assistance.  

The National Institutes of Health (NIH) Clinical Center is the nation’s largest hospital devoted entirely to clinical research. Patients come from across the United States and from around the world to receive treatment or take part in clinical trials at the Clinical Center. Currently, there are about 1,600 clinical research studies in progress at the NIH Clinical Center. Much of the research at the Clinical Center focuses on rare diseases, many of which are not being studied elsewhere.

Children who are staying at the Children’s Inn are participating in clinical trials at the Clinical Center. The Clinical Center Patient Information webpage includes important information for patients and visitors. Resources for caregivers are provided on the website, which will be useful for the families who are staying at the Children’s Inn. The website also includes information for children who are visiting the Clinical Center, including information on the pediatric services available at the Clinical Center and information on how to prepare a child for visiting the Clinical Center.

The Office of Patient Recruitment (OPR) shares timely, accurate, and important information about the Clinical Center’s scientific advances, patient experiences, and clinical trial opportunities. OPR helps more than 40,000 people each year find clinical trials at the NIH Clinical Center. Serving as the primary point of contact between those seeking to volunteer in clinical studies and the researchers conducting them, OPR is here to help you. For questions about patient recruitment, please contact 1-800-411-1222.

The National Library of Medicine (NLM) has been a center of information innovation since its founding in 1836. The world’s largest biomedical library, NLM maintains and makes available a vast print collection and produces electronic information resources on a wide range of topics that are searched billions of times each year by millions of people around the globe. It also supports and conducts research, development, and training in biomedical informatics and health information technology. In addition, the Library coordinates a 6,500-member Network of the National Library of Medicine (NNLM) that promotes and provides access to health information in communities across the United States.