There are many ways that patients, and sometimes family members, can participate to help medical science learn more about PAH, with a goal to develop better treatments. Some research studies share anonymous specimens with other teams to advance progress, but most studies keep all identifying information completely confidential.
Patients may be contacted and asked to participate in research, or can themselves initiate contact with research investigators. Research to advance understanding and treatment can happen only by cooperation among patients, research teams, health care workers and organizations that support research. All components are important, but patient participation is the most important part to allow further progress to develop in any medical field. Although it is highly desirable and respected, patient participation in research is completely voluntary and is neither required nor expected.
Sharing confidential medical information and family information in registries
Some research studies may not include additional tests or treatments, as they only request access to standard medical and personal information to answer different questions, such as why some patients have a better or worse course than others. Some studies also include information about the health of family members to try to learn genetic relationships and causes which can influence many medical disorders.
Sharing biologic specimens
Some research studies collect specimens from patients or family members, including blood specimens to test for cells or compounds that might cause or be indicators of PAH, or for DNA to study genes related to PAH. Even specimens like urine may be requested, as it contains breakdown products of body compounds that may help understand PAH. Most research studies pay for all of the expenses to obtain and ship specimens and for the tests.
Lung tissue specimens
Patients who are planning to have a lung transplant, can request before the transplant that their PAH lungs that are removed will be donated for medical research purposes. Some lung transplant teams may ask for the patient's consent to use their lungs that are removed for research.
If transplant is not possible or if a patient decides not to have transplant, the lungs and heart may still be donated for research purposes when a patient is no longer living. Patients who choose to help research in this fashion should inform their next of kin and discuss with their doctor their desire to plan for an examination after life (autopsy) to obtain tissue specimens to help PAH research.
Participation in clinical treatment trials
A list of clinical trials can be found on the PHA website or on ClinicalTrials.gov.
